Confessions of a Starbucks addict

My mother was right. If you don't sit up straight, stand straight and tall, you'll be hunched over and have back problems for the rest of your life.

Doing all the laundry over the past few days, I've learned that she was extremely brilliant. I have never stood straight, never sat any way but slouched, and oy! I'm paying for it now... After not having done housework in nearly a year, the laundry I'm doing has amounted to not only a mountain to traverse, but back problems so painful that I feel the only way I'll get any relief is to put myself into some sort of traction! I'm talking the old, torturous kind of traction. The kind where you lie down and have your wrists and ankles bound and the table slowly pulls you apart. I don't know why, but that sort of traction has a certain appeal right now. I must be sick in the head!

I think I've knocked half of my tailbone out of whack. I know that my upper back is permanently out of alignment...my mid-back (opposite the side of the tailbone misplacement) feels like someone is stabbing me with a hot poker. I'm a mess.

I know that our insurance covers chiropractic. I wonder if they cover massage therapy... I could really use a hot tub right about now.

If you've not learned anything from this post, remember that your mother knows everything and she's always right!

No, I'm not really... It's the laundry mountain.

I used to love doing laundry. It is the most relaxing chore in the world. At one time if I were given a choice of cleaning the kitchen or doing the laundry, I'd choose laundry. Yes, laundry takes hours to get done, but you have lots of break time in between each load. There's a break between setting the clothes in the washer, putting them in the dryer and starting a new load in the wash, pulling out the clothes from the dryer and folding them, switching the wash to the dryer, etc., ad nauseam. There's something special about that routine that I used to love.

My love affair has officially ended.

I would much rather be cleaning a kitchen where I get to see the results of my labor rather instantly. Give me an hour in the kitchen and it looks as good as new! Unfortunately, in a family of seven, the laundry never ends. God help you if you skip a day of your laundry routine. Suddenly you've no longer got a manageable few loads of laundry, no... You end up with not only the few loads you should have done yesterday, but you've got the few loads for today, along with their children. Where do these children come from? Seriously, instead of the maybe six loads you'd assume you'd have....a few plus a few equals six, right? I was always told a few equaled three. Three plus three is six, right? Apparently not. In the world of laundry three plus three equals ten to fifteen!

Granted, I've been sick. I have been expressly told by my doctors, "No housework." So the procreating laundry demons have been running amok in my house. I don't have a specific "laundry room" in my house. Most houses in Washington seem to have those. I seriously think the architect of this house was unmarried or somehow disenchanted with his wife. He made the main bathroom of my house the "laundry room". Imagine if you will: a 7' by 9' room, a small vanity, a normal commode, a shower/bath combo... add in a 70 gallon water heater and a full-sized, front-loading washer/dryer set. What psycho thought this was a good setup for a laundry room? In a five-bedroom, two-story house no less? Me thinks the architect was on drugs or something!

Of course there is no central laundry sorting area, since this room is also a bathroom. There's also no place to fold and pile the clothes when they're done. The job of clothing pile-upon is the dining room table's. He's not too happy with me right now. He knows that he's better than a place to dump clothes on. He's looking very angry at me right now...I think he knows that secretly I do want to put out nice spread of the china, scrumptious food, and tantalizing desserts, but he's still not happy that he's relegated to "laundry workhorse" today. Poor table. I'll have to treat him to a rub down with Murphy's Oil or something.

Do you think that anyone would notice if I stuffed our vehicle full of clothing and took it to the Goodwill? I think Tani would notice her clothing missing, but I think I could fool the rest of them. Unfortunately I'm also one of those people who likes to wash the clothes before I send them to charity...so it means I still have to do all this laundry.

Wish me luck with traversing this mountain. It's a big one!

No, I'm not talking how holidays break... I'm talking about holiday breaks, the kind that you get when you're in school. The kind that you sometimes get when you work (if your company is nice enough to be closed on holidays and not open the next day), where you get a nice, long weekend.

We had plans for this weekend. We had planned to move rooms around in the house. No, we weren't going to demolish walls and build new ones. We were going to move people into different rooms. If you know me well, you know that I don't like things to stay the same too long. In the seven years we've owned our house, we've probably moved things around twenty times. When I say "we", I really mean "Troy and the kids"... I supervise. It's a perk. I'm the Mom.

Because I've been sick for the last eleven months, I haven't felt the need to move things around. However, this weekend I found out that my parents are coming up for Christmas. To me, this means I need to have a spotless house. I haven't cleaned in eleven months. I have children who haven't cleaned in that amount of time either...well, they probably have, in fact I know they have, but you couldn't tell by looking right now. One thing about moving things around in the house is that it's an easy way to purge all the crap that's collected in the time since thing were moved last.

I let everyone know on Friday that this was the plan for the holiday break. Meaning we had three days to get what I wanted done, done.

Here I sit. It's Sunday. No one has done a thing. Not true, Troy got rid of some of the trash in his office. The kids, nothing.

I. hate. holiday. breaks.

So last Friday I had my appointment for the right heart catheterization procedure. It was quite an eventful day. The day before I had called the nurse to make sure of my appointment time, go over my medications, and we talked about when I needed to stop eating. I asked about setting my basal to a reduced amount because of having to fast (this ended up being a teaching lesson for the nurse, since she had no idea of what an insulin pump was). Lastly, I asked her about my ability to ride public transit after the procedure. I wanted to make sure that it would be okay, as I have a huge aversion to driving in Seattle. She assured me that it would be no problem at all.

I get up early and rush to the bus stop. Because Troy had to get the girls ready for school, I decided to forgo his offer to drive me to Kent Station, and I just walked to the bus stop close to our house. I learned that it takes me longer than 10 minutes to walk to that stop, which is all of four blocks away. The reason I learned this is that I missed the bus that I wanted to take. I had to wait at the stop for the next one. Luckily, this particular stop is serviced by two bus routes, running about 15 minutes apart. This was good because that meant that I didn't miss the express bus up to Bellevue. If I had, I would have been an entire hour late for my appointment!

It turns out that I could have missed the next four buses to Bellevue... When I got to the medical center I had to register, go get lab work done, then go down a floor and find the cath lab. This room is mysteriously hidden. It looks nothing like the rest of the offices on level 2. I walked past it about four times before a hospital volunteer helped me find it. Even with my excruciatingly long walk around level 2, I was still on time. I get settled in to the waiting room, waiting to be called. The tech at the front desk asked me if I had someone there to drive me home. I stated that I didn't, as the nurse said it would be perfectly fine for me to take the bus home. This caused some controversy... you see, apparently you can have a heart cath done with sedation. I wanted the sedation if I could have it. They won't give it if you don't have a ride home. Apparently they don't trust that you'll tell the bus driver where you need to get off the bus, and you'll end up in Siberia or somewhere...now, I don't know of any buses that run from Seattle to Siberia, but hey, there's always a first! At worst, I'd probably end up circling between Seattle and Bellevue or something. So after the disappointing news that I'd not be allowed sedation, I sat down and started a Sudoku puzzle.

Then I waited. And waited. And waited.

People were streaming in and out of the office. Patients who got there much later than I were going ahead of me. I was getting frustrated about it. After about 2 hours, I finally asked the tech at the desk what was going on. (Mind you, the entire two hours I was stewing and panicking about not being able to have sedation.) As the tech came back out, a nurse came out to talk with the family who was waiting for a patient. This nurse tells the family that the procedure is taking longer than anticipated because of some really "miserable" blockages. She muttered something about her being lucky to have come in that day...nice. Great bedside manners these people have, yeah?

So the tech tells me that there were some complications with the patient who was ahead of me, but it should only be a little longer of a wait for me. Gee, I wonder what patient was ahead of me that had complications?!? I sat back down. It wasn't a big deal waiting, and please, fix someone if you have the means and they want the fix! But you know, I have needs too... Remember, I haven't eaten now in more than 14 hours. Haven't had a thing to drink in more than 10. I check my blood sugar...94. Yay, at least lowering my basal was a good thing. I'm stable, not super hungry, I'm good. As an aside here, a lady in the waiting room sees me checking my sugar. She voices that she has to do that to her cat. Here I am thinking that I'm going to get an earful about how cat diabetics are just like human diabetics...it's going to be one of *those* conversations. She then surprises me by actually being knowledgeable, somewhat, about diabetes. We talked about treatment methods, and though for cats it's pretty straight-forward, in humans it's not so much. She actually wanted to know the differences in treatments and such. She was quite a pleasant woman.

Finally they call me back to get me ready. It is now close to four hours since my appointment time. I'm tired, cranky, and hungry. Seriously hungry. I was feeling quite fine, but I knew that I would need to eat rather soon. They get me ready, explain the procedure, apologize for not letting me know that I couldn't get sedation, and stabbed me in the neck to fill me up with lidocaine.

The most painful part of the entire procedure was the pressure they kept putting on my neck. They bore into your jugular vein to get to your heart. It's called boring in, but really it's just like getting an IV line put in. The needle is a little bigger, maybe 12 or 14 gauge, instead of 18. As they put the guide wire in, the sound is much like that of a pipe cleaner wire going in and out of a small pipe, or that of a piece of metal being raked against a metal sander. It's that quick ratcheting type of sound. Right next to your ear. I've never been one who had a problem with nails on a chalkboard or similarly annoying sounds, but the sound of that wire going in was just excruciating! Also, the pressure in my neck was really painful. Though I was anesthetized for the initial stick of the large guide wire, it still hurt a bit. I'm sure that it would have been much worse without the lidocaine.

At first, the surgeons weren't sure that they were getting accurate readings from the catheter. I heard a few comments about low pressure readings and weird RV traces. They ended up drawing blood for labs, directly from my heart. Then they repeated the pressure and RV readings and they came back normal. Remember, they were looking for pulmonary hypertension, and with that it's expected that you'll have high pressures in the pulmonary artery. They were originally getting low pressures...which would mean I'm even more bizarre than most people think! But alas, the pressures turned out to be just fine. They had the cath too far out from actually blocking the artery, so the pressure was falsely low. After the lab draw, they were able to get the cath into the correct position.

The one thing that bugged me was the part where they were advancing the cath in and out of my heart. They told me to expect my heart to flutter. I could have used the sedation at this point. Seriously. That fluttering was bad. It made me start sweating, my heart felt like it was going to jump out of my chest. It was awful. If I ever have to do this procedure again, I will have a ride home...trust me on this!

When the surgeons were done, they had a nurse stand by to put pressure on my neck, so as to close the wound. I think I have a permanent kink in my neck from this lady. She was nice though...she just didn't want me to bleed out on my way home. Heh. The "kinky" nurse then bandaged me with a couple folded up pieces of gauze with some tegaderm on top. Next in was the nice nurse from the land of Oz. He told me that my blood sugar reading was 42. That was from the blood in my heart. While I was lying there, I didn't really notice that I was low...just felt really hungry. He was a sweetie-pie. While I was getting back into my street clothes, he went and raided the cafeteria for me. I got a nice turkey sandwich on wheat, and apple, two orange juice boxes, Lorna Doone cookie snack pack, and four Fig Newtons. I then left.

Got out to the bus stop and my bus arrived within a couple of minutes. That was nice timing. I sat in the back of the bus and started chowing down on my food. I got off of the bus in Bellevue and as I was transferring into the express bus to Kent Station, the driver told me to stop letting doctors give me my flu shot in my neck. Funny guy. He's driven me quite a few times over the last month, so he kinda knows what's been going on. He reminds me of my grandpa. :D

Once I was home I slept. It had been a long day. It wasn't until Saturday that I realized what my pain would have been had they not given me lidocaine. Ouch, ouch, ouch! It wasn't easy to move my neck for any reason. I also was able to take the bandage off. Small little hole with a bruise on it, that quite looks like a hickey. Bad, really bad. Hehe.

My cardiologist called me yesterday. The results: no PH, and nothing else to explain the shortness of breath. He would be inclined to do a left heart cath if not for the fact that my problem came on suddenly. If it had been gradual, he says, then it might be coronary artery disease of some sort, but because of the suddenness, he really thinks this is pulmonary. He told me to call my pulmonologist back and get in for a follow-up. Ugh! He did apologize for it not being PH...he knows that it's been a long time since the start of all this. He's glad that it's not PH, but he said that a lot of his patients who have PH are not happy people, and he liked my personality and didn't want me to lose it because of a disease... that was nice, but I still want answers!

I'm trying to wrap my head around the fact that whatever my health issue is, it may take years for me to find the right doctor to figure it out. Why is there not a real life "Dr. House"?

Yesterday was fun. On top of having a hellish cold with a pre-bronchitis cough, I had my appointment with the cardiologists. The appointment was set for 10 AM, which wouldn't normally be so bad, but when you like taking public transit into Seattle, well you just have to get up a lot earlier in the morning than you're used to... No big deal, but was I tired!

Cue spotlight...cue robot named "fellow cardio"... his lines: ask patient a bunch of questions every other robot has asked, listen to patient's heart and lungs, the robot then declares that the best route to go would be just the right heart cath. No need for a left heart cath, since it really doesn't look like the patient has any congenital arterial diseases, as Dr. Pulmo thought might possibly be there. Fellow cardio exits.

Cue Dr. Cardio... imagine a spotlight right on him, imagine the scenery...sterile white, a lone exam table, a patient (me) sitting in a folding chair falling asleep leaning on the built-in desk in the room. Patient is tired of being patient. Patient is just tired. God-like Dr. Cardio greets patient with a warm handshake and a bit of humor in his eye...

Dr. Cardio: Please sit on the table and let me have a listen to your heart.
Patient: Okay, but I have a cold so I'm sorry if things are rattling around in there.
Dr. Cardio: That's okay, I'm only listening for one thing.
Patient: Uh, ooookaay...?
Dr. Cardio: Deep breath in, out, iiiiiiin, oooooout, iiiiiiiiin, ooooooout.
Patient: Um, sorry about that. I'm trying, really I am.
Dr. Cardio: It's okay, I heard what I needed to hear. Please sit back down in the other chair.

Fellow enters with papers in hand. Dr. Cardio starts talking about what needs to be done next. He looks at patient and monologues:

"So basically we don't think that there's anything wrong with your heart. However, the pulmonary guys don't think there's anything wrong with your lungs. Your symptoms are worrisome, especially because the onset was so sudden. We obviously know that *something* is wrong, but your symptoms and the test results don't really tell us that it's anything wrong with your left heart or your arteries. So what are we left with? Pulmonary hypertension is the first thing that comes to mind. It's a rare disease, and you're a perfect candidate for that diagnosis. Normally we like to remain uninvasive in our testing, but unfortunately for about 60% of the population we can't achieve a diagnosis without being invasive. You are one of the 60%. So, we are going to schedule you for a right heart cath. This procedure is done on an out-patient basis and it only takes a few hours. You'll get the preliminary report before you go home. We honestly think that this is the diagnosis that you'll get. However, this procedure could also tell us nothing at all. If it tells us nothing at all...well, then I DON'T KNOW. I guess we'll just hope that this is going to be your diagnosis and that we'll have it all figured out for you during the cath. If not, we'll send you back to the pulmo's because you really don't seem to have any problems with your heart as far as we're concerned."

Patient then looks at Dr. Cardio and says, "Well, at least you're not telling me it's all in my head!"

Dr. Cardio then restates that there's no way this could be in the patient's head because the studies already done reflect that there *is* something wrong. He hopes that the patient can be a little more (heh) patient while running more tests. The patient states again, "At least it's not in my head!", going on to say, "So, basically you think I have PH, you're not sure, but it's not a heart problem, unless it is PH, in which case I never need to see you again anyway, since that's treated by pulmos...?" Dr. Cardio smiles and agrees.

Patient: What happens next, if it's not PH and the test shows nothing else?
Dr. Cardio: Then I'm out of ideas.
Patient: So you're sure it's not ideal to do a left heart cath as well?
Dr. Cardio: I'm completely sure.
Patient: So essentially it's PH or nothing?
Dr. Cardio: Well, not nothing, it's something... I just don't know what else it could be.
Patient: Well, at least it's not in my head.
Dr. Cardio, fellow, and patient all laugh. Dr. Cardio gives patient a pat on the shoulder, bids patient a good day and exits, stage right, with fellow trailing.

The spotlight dwindles, the patient goes out to schedule the procedure, then goes outside and boards a bus...and falls asleep (here we zoom in on the sleeping patient and fade to dark).

I'd like to mention that because I fell asleep on the bus, I almost missed my stop at Kent Station. As I said in the opening paragraph, I was tired!

Let's just get right to the point. I hate Seattle weather. I really despise it. There's no rhyme or reason to the weather here. Everyone says that it rains constantly, and while that's mostly true, it's not really that it's constant...it's more like it rains constantly for a couple of days and then it gets really sunny-but cold-for a day or two.

This pattern really messes with the natural way people are supposed to live. Some people, namely me, have this weird thing inside them that triggers a cold whenever the weather changes. I really wish that the weather would stay one way for awhile. I can handle weeks of rain, I can handle days of snow, I can really handle sunny and warm months... Why is Mother Nature playing games? What is it with this two days of rain, one day of sun and warmth, two days of fog and dreariness, one to two days of sun and cold? All this wackiness has given me the cold of the century! I feel like everything from my neck up is dead. I can't hear, my eyes hurt, my nose is running but congested at the same time, my throat is scratchy and painful... I hate being sick. :(

I must have some really crappy karma that I'm paying for...heh.

On Thursday I had my Exercise Tolerance Test along with another Pulmonary Function Test. Since I don't drive in Seattle, I took the Metro bus system...boy does that bring back memories of my teenage years!

So I get to my appointment and get settled in for a long few hours. First, the pulmo tech numbed up my wrist so that he could draw blood for an arterial blood gas test. That was the most interesting test I've gone through thus far. It was amazing to see how really forceful your arterial blood can be! He then left the room and came back when the results were back. The only thing "off" on the test was my carbon monoxide test.

They then sat me down to do the PFT. That went well, but it showed the same numbers as my test from back in April. So I still have a severely low DLCO (my lungs' ability to exchange oxygen and carbon monoxide out of the air and into my blood stream) readings, and a restrictive pattern in my lungs as well. They did a bit of a different test on this PFT. They had me panting into a tube and then stopped the tube from moving any air. This showed whether or not my lungs got tired while doing this over and over or not. It showed that they didn't, which definitively proved that I don't have Myasthenia Gravis. (Which I knew anyway because they drew blood to find out if I had the antibodies for that.)

After a quick site change for my insulin pump's infusion set, because the doctor needed to use my left arm for the blood pressure cuff, I got situated on the stationary bike for the ETT. Basically what that entailed was being hooked up to the blood pressure cuff as well as a bunch of ECG leads, while riding a stationary bike as it progressively puts out more resistance. I did pretty well on the bike...I was told that my goal was 10 to 15 minutes on the bike for enough data to be gathered. I did 13 minutes 34 seconds. I just couldn't take it anymore. I was getting dizzy from breathing so badly. While I was on the bike both the doctor and the pulmo tech were readjusting my ECG leads. Apparently they thought that from the readings they were seeing were really wacky (more on this later). Eventually they got them into the correct positions. The doctor and the pulmo tech let me go after a bit of a recovery and making sure that my arterial stick was completely healed.

On Friday I had to go back to the UWMC for my results. I saw "fellow" Dr. Pulmo this time. She's pretty nice, and rather smart. :) When she walked into the room, she immediately asked me if everything was the same, better or worse. I answered that it was a little worse and that the new shoulder pain I was having was a real bummer. It only happens when I'm really out of breath, but it's really a pain that I'd rather not have. She said that it was interesting that I'd mentioned that because it goes along with one of the two possible diagnoses that she wanted to talk with me about (she'd get to that later though). So, she talks about my labs being all negative, talked about the CO in my blood, talked about the fact that I don't have Myasthenia Gravis like they first suspected, etc. She then told me that I am no longer a pulmonology patient...! I looked at her quizzically. She went on to say that the ETT proved that I do not have a problem with my lungs. What I do have is a problem with my heart. It'd be easy for her to refer me to a cardiologist and tell them I need a right heart catheterization, but because this could also be a problem with the left heart, to ask a cardio to do a left heart cath as well would make that cardio tell her to get out of his profession. Basically meaning that she could order both, but a cardiologist is going to want to see me first before he even considers doing the left heart cath. So, ugh...I've got to wait some more before they can figure anything out. She told me that she put on the referral that my appointment was urgent and that I needed to be seen within 14 days. Hopefully they'll call me on Monday to schedule the appointment.

So what are the two diseases that I could possibly have? Well, there's the obvious Primary Pulmonary Hypertension, and then there's the other... Congenital Coronary Artery Disease. Now, because I'm under 45 and because Coronary Heart Disease doesn't happen in women under 45 without some underlying reason (which she thinks in my case is my high clotting factor and/or high platelet levels), then it's congenital...meaning I was born with a ticking time bomb. The only way to diagnose the CAD is to do a left heart cath. So that's where I'm at. After all of the tests and all of the crap I've gone through, it's down to one of two diagnoses...funny that both of them have acronyms. Troy loves acronyms. ;-D

Dr. Pulmo (the fellow) was very reassuring that I'll be all right, that she didn't want to scare me but when I practically forced her to tell me why I needed a cardiologist, she knew that I was the type who needed to know everything. I like doctors who don't pussyfoot around you. Give me the facts, give me straight answers. I hate doctors that aren't true to their patients. I like this Dr. Pulmo very much. :D

I wish that I had better news. I'm taking it kinda hard today. I was fine yesterday, after the appointment, when the bomb was dropped. In fact, as I was leaving my appointment, Erika called me. She's a friend that I met online, back when I was pregnant with Kaycee. She was pregnant with her twins at the time. She moved to Seattle a couple of years ago, and happens to work at the UW. We met outside and went to have some coffee. At least she didn't get me completely lost this time! (Last time, she had me going through a maze and I was a few minutes late to my appointment, which is funny now, but then I was completely out of breath and in some distress...) We had a good chat. I told her a funny stalker story, which I hope made her day a little brighter. :)

Now, I've been quite melancholy all day. I'm realizing that with either diagnosis, my life is going to drastically be altered. I'm not sure I'm ready for those changes. Being a Type 1 Diabetic isn't much of a change from daily life. Yes, you either give yourself shots or wear a pump and bolus for your meals...but really, it's not that difficult. As long as you keep everything consistent, for the most part, you'll be consistent with your glucose numbers. Sure I spike up sometimes, and have lows quite often, but I attribute that to my being stupid in estimating the number of carbs I'm taking in. I don't have to follow a strict "no sugars, low carbs" diet like a Type 2 does, so it's really not that different than being "normal". However, with either of the two diagnoses, I'll have to alter my lifestyle like crazy. Exercise will be different, food intake will be different, lifespan will be different, I will be different.

I'm really not in a good place right now. I know that other people are fighting much worse diseases, but honestly when it happens to you, you feel like the only person going through it as well as feeling like you've got the worst problem in the world.