Tag: quality of life

Good morning!

Last night I went to bed at around 10:30 or 11. I was able to fall asleep with the CPAP on. Once I woke up with a horrible tickle in the back of my throat that made me keep coughing. I turned the humidifier back down to 2 and that seemed to help, oddly. Another time I woke up and took the mask off, then I woke up again later and put it back on. Finally I woke up a third time with my throat really dry so I took it off for the rest of the night. Since I was half-asleep most of the time, I didn’t check my clock, so I don’t know how long I actually wore the mask last night.

I started to wake up around 6, and dozed until around 6:30, when I finally got up. I just didn’t feel the need to be in bed anymore. This is remarkable because for the last week or so I have barely been able to get out of bed. Yesterday, for example, I stayed for as long as I possibly could–until 9:15, which is 15 minutes before I leave for work.

But today I didn’t want to sleep anymore, so I got up and read my webcomics and checked out a couple of blogs. Then the sun was up enough that I thought I might take a walk outside, so I did.

It was about 35 degrees out, so I put on workout pants that I thought were warm enough, a shirt, and a sweater. I did not wear my gloves, though I should have, and I don’t think I even own a hat anymore, so I went bareheaded.

As a result of being so underdressed (I’m not used to the cold anymore!), I wasn’t able to stay out long, just 15 minutes. But I felt like I could have continued, so when I got back inside I hopped on my bike, which is propped up on a resistance stand in the second bedroom, and rode for ten minutes. As I rode I thought about ways I could get a TV into that room so I won’t be bored stiff when I’m exercising.

It wasn’t a huge workout, but it was enough to build up a sweat, and I feel pretty darn good.

I’m going to try to keep this up all week. Also, since I’m taking my lunch today, I might see about a brief walk during my break as well.

For now, breakfast, then shower, then lunch-packing. Whee!

Adjustments

I finally got my CPAP on Thursday. I’d been feeling bad all week and it was the worst that day; I felt dull and tired and dizzy. I was eager to get going with the CPAP so I could start feeling better again, like everyone said would happen. So that night I set it up on my nightstand and used it for the first time.

It was not a very successful first night. Every time I finally started to drop off into sleep, my mouth filled with air…so I woke up immediately. It got very frustrating, and after about 45 minutes of that I gave up on the CPAP, turned it off and took off the mask.

The next day at work, though, I felt great. I had energy like you wouldn’t believe and I was dancing around and singing to people. I don’t know if it was psychosomatic or if 45 minutes of getting lots of air while resting really made that much of a difference. (Another factor is that my doctor had me go back down on some of my heart medicine to get rid of the dizziness. That might be the main reason I felt so much better.)

I was told it could take six weeks to fully adjust to using a CPAP, so I wasn’t discouraged by the first night’s failure. In fact, the consultant at the place where I got the CPAP said I might have to start out only doing half an hour a day. I went to bed last night determined to leave it on as long as I possibly could, and to try to stop the air from filling my mouth…somehow.

I was somewhat successful in dealing with the air going into my mouth. I could kind of tell when it was going to happen, so I would just inhale a lot and then breathe it all out. I was awake when this happened, but not fully awake, which was an improvement.

This time, the problem was dryness. My CPAP came with a humidifier that is supposed to keep my nose and throat from drying out due to all the air blowing into it. I had it set to the average level, 2, but after awhile I woke up feeling awful because my mouth and throat were so dry. I kicked it up to 4 and tried once again to sleep, but the dryness never went away. I think I must have been opening my mouth while I was asleep, so that’s something else I’m going to have to put my subconscious to work on.

Listen, subconscious: no letting air fill the mouth, and no opening the mouth. Behave!

My mouth was so uncomfortable that I had to stop the CPAP for that night, stick a cough drop in my mouth, and go to sleep normally. But I was pleased to find that I’d managed to wear it for two hours this time.

One thing I’m kind of concerned about is the redness on my face when I take the mask off, and the irritation I feel on my skin. I don’t know if I’m allergic to the mask or if that’s just what happens when there’s a vacuum seal on your face. I’m hoping it’s the latter. The redness goes away after hours of not wearing the mask. Hopefully things will continue this way as long as I keep the mask cleaned daily like I’m supposed to.

The CPAP requires a lot of maintenance. I have to refill the distilled water in the humidifier daily, and wash it out weekly. I have to wash and air-dry the mask daily, and the straps that hold it to my head weekly. And there’s an air filter on the CPAP that has to be changed out every month or so–I have two of them so I can switch them out and then wash the dirty one. More little things to add to my routine, I suppose. It’s hard for me to do things on a monthly basis, but hey, if I can remember to pay the rent, I guess I can also remember to change an air filter.

I don’t remember the CPAP irritating my skin, or my mouth filling with air or drying out during my sleep study. I don’t know if I’m doing something wrong or if it’s just that I’m more relaxed at home, so I do things I wouldn’t have done at the study, like relax my throat or let my mouth fall open. Regardless, the last two nights have been very irritating, and while dealing with the various issues I’ve thought that I don’t want to have this hassle in my life. But it’s important, and like any other irritation it has a time limit, and I don’t have to worry about it the rest of the time…so I’m going to suck it up and deal with it.

I’m pretty sure the only reason I have sleep apnea is because I’m overweight, so if I can solve that problem I may not have to do this anymore. Yet another very good reason to be healthy.

Diving back in

Getting back to work yesterday was such a relief. I’m tired of seeing my previous, whiny post about how illness ruins my life, so I figured I’d write a short post about how much I got accomplished yesterday.

As I Twittered, things didn’t go perfectly smoothly without me. There are things only I know how to do, things I’ve told people how to do but they’re a little rough at it, and things I’ve trained people on but I’m just better at doing. I had a little bit of catch-up work to do to get things up to my level. I know I sound egotistical, but I’d like to think that everyone sets standards for their work and then tries to meet them, and you wouldn’t think that way necessarily when you’re filling in for someone else’s job–so see, it’s just realism, not egotism.

;>

Regardless, I got the site to where I wanted it to be, and then did some work I’d been putting off due to other projects, and then did what I call my TPS reports (they actually do serve a purpose, but they are so boring). At some point I took a 45 minute lunch break and went to Wendy’s with Elgin and Fichtel, which was cool. I did not have a Frosty, shockingly, but alas, I did have fries. Back at work, I handled an ad issue for sales, made two calls on another ad issue for sales (but no answer), and then dove into a design project I volunteered for last week. I had received an email from the printing company that they needed the artwork ASAP. The files I was working with were huge, so I literally could not have any programs open but Photoshop while working on them, so I had to work it in during a non-busy time. Fortunately I was able to do so yesterday, and I got the design done! Now I just have to hope it’s acceptable for printing…it has a lot of color and I’m not sure what that might do to the price.

Then I did my usual evening tasks–my job ramps up during the last two hours due to the evening newscasts. I ended up staying a little late, but since I don’t have any sick hours left and I missed two and a half days this week I guess that’s a good thing ;P

Now it’s Friday, the last day before my vacation. I’ll finish up my TPS reports today, work on uploading some video to various places, make sure that project is acceptable for the printer, and do my regular tasks. I also have a doctor’s appointment this morning and a salon appointment this afternoon, and I’m supposed to take pictures of the weekend talent at some point.

Ah, what a life I lead :)

I’m getting tired of this ;P

I got a fever late Saturday night, and it kept coming back throughout Sunday and Monday. I took Tylenol Cold whenever it got too bad–i.e., I was freezing to death–and otherwise just tried to rest and drink juice. This morning I had a bit of a fever so I called my GP’s office for an appointment to see what he thought. He only had an afternoon appointment available, so I took that and then went to work.

I got caught up on a few things and realized the breadth of work that is still to be done, then headed over to see Dr. B. I told him my symptoms–neck pain, slight sore throat, occasional cough, throat and nasal congestion, fever–and that I had been sick like this a couple weeks ago.

He surmised that I have just had two different viruses back to back, but he took a throat culture and prescribed Penicillin just in case I have strep throat.

As we were walking out of the exam room, he asked, “Do you need a work excuse?”

“For yesterday?” I asked. “I’m working today.”

“You shouldn’t be,” he replied.

“…well, then, yes, I need an excuse.”

And he wrote me a note that says I can’t go back to work until Thursday.

Seriously. I have been out of sick days forever, and I have work that needs to get done, and I don’t know how I can expect to be regarded as a professional if I’m out sick every couple of weeks! This is really frustrating.

I went to Walgreens to fill the prescription, and I picked up some hand sanitizer and Lysol disinfectant spray. I’m going to try to be ridiculous about cleanliness from now on. I’m also thinking I’d like to see what sorts of HEPA room filters are available on the market and if I could afford one, or preferably two: one for home and one for work. That might not be possible given all the other medical bills (another reason I’d like to be able to work!), but it’s definitely worth looking into at least.

Bah!

Sleep study #2

After my first sleep study back in October, it was determined that I have moderate sleep apnea. I was seen by a sleep specialist and the ear nose and throat doctor again, and then I was sent back to the sleep study place to be fitted for a CPAP (Continuous Positive Airway Pressure) machine. With sleep apnea, you stop breathing while sleeping because your airway collapses. A CPAP forces air into your nose, helping you to breathe properly.

Coincidentally, I ended up with the same sleep study technician as last time, Chris, and had my study in the same room.

I had to wait for some time as Chris set up the patient next door, a small baby. Fortunately, this time I’d brought my laptop and box set of Initial D, so I got ready for bed and then watched several episodes. There was a hospital wireless network available, but it was unsecured so I decided not to get online.

Finally Chris arrived to wire me up. This time I was able to get a picture before he put the hair net on:

Chris was just as talkative as last time, but I was pretty tired, so I wasn’t as involved in the conversation as I might have been.

In the middle of getting me set up, Chris had to leave the room to get a humidifier for the CPAP, and while I waited for him to get back I drew a picture of Batman on the markerboard door of the closet.

Finally it was time to sleep. I got into place and Chris helped me put on the face mask. It only covers the nose. There’s a bunch of soft padding on it so it’s comfortable, and there’s a piece of plastic that connects to a padded bar that goes on your forehead, to add stability. That whole unit is then strapped to your head with adjustable fabric belts, which you can slip off of hooks if you need to remove the mask quickly.

It was weird after it was on and Chris first started the flow of air. My first instinct was to rip the mask off, as if I was being suffocated. But I forced myself to breathe the air that was blowing into the mask.

Then Chris asked me a question, and let me tell you, it is very weird to try to talk only to hear a weird raspy sound and feel a torrent of air blowing out of your mouth.

“Did I ask you the question because I wanted to know the answer, or because I wanted to hear you do that?” Chris asked. Hmm, let’s all think about that! ;>

We got the mask settled in on my face and I got comfy for the night.

I have a love-hate relationship with this photo (which Chris kindly took for me). Obviously, I wouldn’t send this out with my Christmas cards. I mean, it’s just not flattering. But at the same time, it’s so perfectly representative of what it’s like to be wired up for a sleep study.

It doesn’t look comfortable, does it? But remarkably, my biggest complaint about the situation would have to be that the pillow didn’t provide proper neck support. I’m spoiled by Tempur-Pedic. And that’s it!

The mask didn’t really bother me while I was asleep. When I first started trying to go to sleep I wondered if I would wake up, forget about the mask, discover it, and freak out. But that didn’t happen. I vaguely recall the mask moving off my nose slightly, and moving it back myself, and I also vaguely pulling the mask off as best I could, only to have Chris come fix it, but I wasn’t particularly distressed by any of these events.

I slept very soundly, and I was very unhappy when Chris woke me around 7.

The exit questions were the same, but my answers were really different. Can you remember any dreams? No, not at all. How long were you asleep? I have no idea. What time is it right now? No clue. What time did you go to sleep? Um. It’s kind of scary that my answers were so precise before, and this time…nothing. Does this mean that I was so asleep that my internal body clock took the night off? And am I not going to have dreams anymore? Because I’ll miss those :>

It took awhile for me to feel like I was awake after that. Chris told me that around the middle part of the day I’d realize that I felt refreshed, but I wasn’t sure about that. I did, thankfully, wake up enough that I felt comfortable driving home.

When I got here I had planned on going straight to bed, but it turned out that we forgot to pay the rent, so I relaxed a little with the intention of going and doing that, and I ended up watching more Initial D and running that errand and just staying awake.

Until, abruptly, I fell asleep on the couch.

The nap was somewhat restful, but not ideal. I kept waking up and hearing the DVD menu music and thinking that I should turn it off, and then falling back asleep. But afterwards I at least felt like I could make it through the rest of the day.

I think what happened is that I actually did get some restful sleep, and when it stopped prematurely my body was very unhappy about it.

I originally thought wearing a face mask was going to be a colossal pain, but now I’m excited to see what will happen when I have my own CPAP. It’ll be cool to see if I actually do feel more rested in the daytime, and have more energy to do things. I would love to start being active again.

I’m not actually sure when all this will happen, though. I think I’m going to get the prescription in three weeks when I go back to the ENT.

Move faster, time!

Worries

I had a couple of bad dreams last night. Nothing horrific, just stuff that I wouldn’t want to have happen.

In the first one Sean and I were having a home built, and we hadn’t heard anything about it for awhile so we went to check it out, and we discovered that 1) they were building the wrong floor plan and 2) a bank now owned it, and if we wanted to get it back we would have to take out another loan. So we could forget about moving into the house, but still have to pay on our original loan for it, or we could move into a house we didn’t want and pay double.

In the second dream I went to the doctor for some procedure that had apparently become routine. They gave me a drug by IV and then (inexplicably) started shampooing my hair. But then they got all worried; apparently the drug had made my heart rate go way too high. I basically sat there wondering what was going to happen while doctors and nurses bustled around, coming in and out of the room. There really wasn’t an ending to that dream.

Today I have an appointment with my GP, Dr. B, although I’m not sure why. I will try to remember to take my calendar with me this time. I’m not seeing Dr. G again until the Monday after Thanksgiving.

If you’ve been watching my Twitter you may have noticed that I’ve been going through a lot of anxiety lately, over my job and my health. My boss has been really supportive during all this, and she talked me down from freakout mode the other day. I think I’m getting a better handle on things. I’m probably just overwhelmed by all the changes that are happening in my life–so much that is out of my control. I just need to create a plan so I can get done what I need to get done. Not just at work, but at home, too. I’ve not cooked anything this whole time; we’ve just been getting takeout. Bleh.

Life expectancy: pretty much normal

:D

I went to the cardiologist, Dr. G, today, and she upped my lisinopril and downed my furosemide and agreed that I seem to have lost all the fluid I had been retaining. She listened to my breathing and asked if I had been dizzy or lightheaded to the point of passing out lately (which I have not). Then she said that things seemed to be going really well for me.

Finally I asked her what the plan was in the long term. She said that in cases like mine, if the heart is going to recover, it usually happens within nine months, so around June we’ll do another echo to see if it has. If it hasn’t, at that point we’ll talk about whether or not I should have a defibrillator implanted to protect me against irregular heart rhythms, which can cause instant death. (Sorry, that was abrupt! But I guess the instant death would be, too. Heh.)

She said sometimes the heart recovers, and sometimes it doesn’t recover but the person feels better anyway, and from a quality of life standpoint those two things are essentially the same. In the second scenario you just have to take extra steps.

Then I asked her if my life expectancy would be affected by all this. She essentially said probably not. If my heart recovers in nine months, then I’ll just be normal. If it doesn’t, then all that will be different is that I will have a higher chance than most of the population of having those irregular heart rhythms.

So I should live into old age. This was nice to hear!

Dr. G also told me that exercise is very good for people with CHF, and I should do as much as I can. The things I should avoid are straining myself, like with heavy lifting or with overdoing the exercise, and getting pregnant (I think I can handle that ;P).

Basically, I got the impression that I should be careful, but not treat myself like an invalid. This makes me very pleased. It can be fun having people do things for me, but ultimately I like things done my way, and there isn’t always someone around to help me out. I’m glad to know that I can still do things myself. Not everything, of course, but more than I was thinking I could.

This past weekend I wanted to go to the Canal. I ended up not going, but I wish I had. Maybe next weekend. The issue will be how to get to the path; my regular parking area is way up on a hill, which I can probably get down but would be a pain to get back up. I haven’t walked up a flight of stairs in weeks so I’m not sure how much of a strain it would be. I could go to the other parking area, which is level with the Canal, but that side of town isn’t so great and I’m not sure I want to park my car there. Decisions, decisions.

In any case, I am going to live my life the best I can and do as much as I can, and take care of myself while I enjoy myself.

Not freaking out (yet)

I’m searching “”congestive heart failure” “life expectancy”” on Google. So far I’m finding a bunch of articles that say life expectancy depends on the severity of the failure and that life expectancy is shortened. I’ve only found one article that actually gives numbers, and it was last updated in 2003, so I’m not sure how much it can be trusted.

I think the word a sympathetic news anchor reporting on these numbers would use is “sobering”.

Although many people with heart failure live for many years, up to 70% of people die of the disorder within 10 years. Life expectancy depends on how severe the heart failure is, whether its cause can be corrected, and which treatment is used. About half of people who have mild heart failure live at least 10 years, and about half of those who have severe heart failure live at least 2 years.

So, assuming this article is accurate, and assuming my heart failure is mild (which I think is a safe assumption given that I’m able to work), I still only have a 50/50 chance of living for just ten more years.

But I have to remind myself that four years have passed since this article was written. Maybe something is different now.

I will try not to freak out too much until I see my cardiologist next week and ask her about it.

However, if it turns out that not much has changed and I am not going to live much past a decade from now–if even that–then some things are going to have to change in my life. I won’t be able to put off all the stuff I want to do until later. And I won’t have to plan for retirement, either, which means I won’t have to feel guilty about spending the money. The first priority will be moving back to Kentucky, and after that, getting to England to see Brooke, and getting back to Japan.

And of course, I will do my best to live as long as possible, which means listening to my doctors and taking care of myself. I can’t eat like I’ve eaten my entire life anymore. I have to eat lean meats, vegetables, no fried food. No more desserts. A lot fewer starches/carbohydrates. Heart-healthy stuff. And I need to go ahead and get a treadmill because aerobic exercise is recommended, on days when I feel up to it.

I had a Slim-Fast for breakfast, a Chick-fil-A Cool Wrap with a fruit cup and Diet Dr Pepper for lunch, and a swordfish steak, baked potato, and steamed veggies for dinner, but while those were healthier options than my usual, I will need to move away from eating out as much as possible–it adds too much sodium.

There may be nothing to worry about; iVillage has a list of questions for CHF patients to ask their doctors, and one of them is “Is my heart failure likely to seriously affect my life expectancy?” which suggests that some heart failure might not (although maybe this question is there because it usually does, but I’m an optimist). But regardless of what I hear at the doctor’s, I am going to work to make these changes in my life so I can be healthier.

New furniture

While Mom was here I got a lot done that I’d been meaning to, including getting a dining room table and a reasonably-sized desk for the office/guest room. My wonderful mother assembled these pieces of furniture for me and she did an amazing job.

Here is my table, which is from the Sears Nigoshi collection:

And here’s my desk, which is by Sauder and which we found at Office Depot:

The long drawer on the desk is hanging open because a part was missing, but the company sent it to us for free and it should be here soon. I’ll take a new picture once I have it.

I am totally in love with all my new furniture. This plus the addition of my second DVD cabinet and the slight rearranging of the living room has made the apartment feel like a whole new place. I’m thrilled with how it all came out. It’s so nice to walk in and feel like I’m in a real home, instead of just a place with stuff thrown into it.

Ugh, again

Yesterday started out a lot better than it ended. Mom was set to leave, but she was still in town when I wanted to have lunch, so we met up at Mikoto. She tried and enjoyed katsudon and I had teriyaki beef and sashimi. We got to say a real goodbye (I was a little grumpy and distracted that morning) and then we both headed off in different directions on I-20. Who knew that hours later I would feel so terrible?

Sometime in the afternoon I started seeing a weird effect through my right eye. I think it’s happened in a mild form before. At first it was just a little dot, in the middle of my field of vision such that I had trouble reading. But then it got bigger and bigger until it was like I was trying to look through a swirling mass of water.

After awhile it went away, replaced by the worst headache I’ve ever had. I guess it was a migraine. I tried the only pain medicine we had left in the first aid kit at work, which was non-aspirin. It did nothing. I was to the point of tears when I told my boss how I was feeling, and she had Elgin drive me home in the Cruiser.

I took my medicine and a Motrin and went straight to bed. This was about 6:30 pm. I didn’t wake up until a little after 4 this morning.

The headache’s gone. I ate some cottage cheese and surfed the web and read webcomics. I think I will go back to sleep for a couple hours, then call work so someone can come pick me up.

Living

Things are going well. Mom has been able to stay longer than I originally thought she could, which has been so great. She actually dusted my apartment. I don’t think that has been done since we moved in.

But seriously, it is so nice to have her here. A lot of people don’t get along with their mothers, which is such a shame. My mom is just wonderful. She was strict enough when we were kids and when we became adults she treated us like adults. Now she’s my friend and my mom, which is just neat. We can sit and enjoy a good conversation or go out together and have fun, but then when I’m sick or upset I can snuggle in for a good Mommy hug.

Plus, it feels so good to have someone take care of you. Sean and I are both really independent, and while we do take care of each other, we’re not doting. And I don’t really want to be doted on by him. I know he loves me; I want him to do his own thing and be his own person. But occasionally I do like to just relax and be coddled, and while I can ask Sean to take care of me sometimes, my mom will instinctively know what to do and just go ahead and do it. It’s such a comfort. I’ll really miss her when she goes back home.

Monday I felt all right up until the end of the day, at which point I got really tired. Tuesday, though, I felt great the whole day, such that I ran errands on my way home and then tidied up the apartment. Yesterday was another okay day. I haven’t had any moments this week where I’ve had to stop and gasp for breath, probably because I’ve been careful not to exert myself too much, but there have been times when I’ve been tired. At those times I just put my head down for a few minutes to recharge and I’m usually fine.

I’ve been sleeping all right, too. Last night and the night before I decided to skip the Flonase to see if that would help with how I seem to lose my voice when I’m at work. And it did seem to help yesterday; I wasn’t nearly as hoarse. I think I can probably stop using the Flonase. Conveniently enough I have a doctor’s appointment this morning, so I will ask him when I go.

I’ll also be asking him if a sleep study is actually necessary–it probably isn’t, so I should be able to cancel it, which will be good. I’m not sure how much of that insurance was going to cover :>

Later today I’m seeing the cardiologist again, and she said she might prescribe a third heart medication.

The next steps I need to take care of are organizing exercise and diet. I need to get a treadmill so I can walk indoors, and I need to figure out a good plan so I can eat heart-healthy foods and maybe lose some weight. It’s funny to try and lose weight at a time when I can’t really exert myself, but whatever ;>

Beyond the health stuff, there are a couple other things I want to do soon. First, Mom wants to buy me a new cell phone so I can take movies and pictures. Sean and I had a ridiculous experience at the Sprint store this past weekend–we were all ready to buy this brand new phone, but their system wouldn’t let us buy it!–so we may change carriers. Hopefully we can make that decision this weekend.

The next thing is to get a dining room table, because I am planning on hosting Thanksgiving. I know the exact table I want, so I should probably just go ahead and order it. The problem will be finding chairs…the chairs that come with the set don’t do it for me. We’ll have to see how that goes.

I also need to get a desk and a file cabinet, or maybe just a desk with a file drawer, for the multipurpose room, so I can get all our paperwork off the floor. (I gave Gargantua the Monster Desk to Rex from work.)

Mom keeps asking me why I haven’t bought an electric piano…I guess I just don’t feel comfortable spending thousands of dollars when I’m not sure I’ll be dedicated to it.

Grandma Flo called and offered to clean our apartment for me once a week, which is going to be a huge help. I’m going to see her on Saturday and work the details out. Also on Saturday, I think Mom and I are going to the mall. Maybe we can all go together…we’ll have to see. Then, that evening when Sean’s up, maybe we can figure out the cell phone thing.

And that’s pretty much what’s been going on. I feel fine on the whole, I have an idea of how things are going to work from now on, and I should be getting more details worked out today with my doctors. So there you have it.

Moving forward

The response to my diagnosis by the people who have responded so far has been interesting. There are some people who are incredibly upbeat–either they are just trying to cheer me up or they seriously don’t think it’s that big a deal. There are people who are seriously freaking out. And there’s the middle ground, which is where I am, where you just kind of say yes, this sucks, and I’m going to roll with it.

Today my mom did me a huge favor and assembled a DVD cabinet that has been sitting in a box in the hallway for 14 months. Then she rearranged all the furniture so it was to my liking. My mom is awesome.

As for me, I got so tired after putting a few DVDs into the cabinet that I had to take a nap :P

I have congestive heart failure.

It’s official after my echo cardiogram this afternoon. Where a normal heart pumps about 55% of the blood out of the ventricle at a time, mine is doing somewhere around 15% to 20%. This explains the freakish swelling in my legs and my overwhelming fatigue.

This could be an extremely delayed reaction to chemotherapy. It could have also been caused by the gastroenteritis I had awhile back, since viral infections are known to decrease heart function. My doctor, an intelligent, well-spoken woman we’ll call Dr. G, says we’ll never know.

Treatment is drugs. Dr. G says she doesn’t think a biopsy is necessary, but she doubled the heart medicines my GP put me on and is adding a third starting next week after she sees me again.

I am still able to work and go about my life, but I have to refrain from strenuous activity, heavy lifting, etc.

If all goes well, my heart will start to heal in a few months.

If all doesn’t go well, who knows what might happen. My mom is understandably upset because something similar happened to her sister Carol: she had a viral infection that led to decreased heart function. In her case, the drugs didn’t work, and she ended up having a heart transplant.

(Aunt Carol is doing fine, although she seems to have circulation problems in her legs if she sits for too long. Aunt Carol is also a lot older than me.)

I, being young and naive, am not particularly worried about recovering from this, but I am extremely pissed off at my life right now. Okay, so, first, we lose everything we own in an apartment fire–lifelong memories that are, frankly, irreplaceable. Then, the best friend I made in Augusta moves to a completely different country. Meanwhile, my large family who I love and desperately want to spend time with all live eight hours away. I finally start to think I can deal with being infertile, only to stupidly take a home pregnancy test…that turns out to be a false positive. The worst day of my life. And then I go in today and have a completely different kind of ultrasound and find out I can’t even take care of myself anymore. I can’t do big-time grocery shopping. I can’t assemble or move furniture. I can’t go wherever I want whenever I want. No biking, no long walks, nothing, because I’m physically incapable of doing it. And it’s not going to be fixed anytime soon.

So here I am trapped away from family and friends unable to take care of myself, but still well enough to work, so I have to drag myself out of bed every day and try not to pass out for eight hours so I don’t lose my job.

This is not the kind of existence I was hoping for when I moved here.

Better and better

I’m still coughing, with the addition of burping, sneezing and occasionally an extraordinarily itchy nose, but I feel so much better. You have no idea. I was downright cheerful at work. “There’s that smile!” my boss said. I threw myself into what I needed to do and dug through some backlogged projects as well, and set up some meetings for tomorrow with what might be described as zeal. It feels so good to be able to get motivated without feeling sick!

I’ve still got symptoms, don’t get me wrong. The throat gunk still makes an appearance and it still tastes gross. But my overall tiredness seems to be passing.

Part of this, I’m sure, is just that I’m so happy that I’m going to see Brooke tomorrow, and get to spend time with her all week. She’s promised to come spend the night here one night, and I’m looking forward to watching a couple of our favorite episodes of Kyou Kara Maou. I also think I’ll introduce her to Detective Conan by way of The Case of the Time-Bombed Skyscraper, because that is a fabulous movie. I will even allow the dub (though a rather important line is changed at the end).

I think I also told her I was going to show her the first two DVDs of KareKano, and I might try to do that, but it’s not a high priority. What is a high priority, apparently, is eating curry and lime sherbet! And I am down with that.

Pajama party!

Today I felt good enough after work to run some errands, including picking up some more prescriptions and going to the grocery. I got more cottage cheese and milk, and a head of broccoli and some potatoes, and a bag of salad, and a bunch of noodles, and some soup. I also bought two pie dishes and two pie crusts, which I hope to use at Thanksgiving…I’m tentatively hoping to host it here, assuming I can figure out where people would sit to eat.

The most exciting thing about the shopping experience was where I went. I decided to try the Columbia Road Kroger, mainly because of the fact that I was leaving the Bobby Jones Walgreens. I figured it might not be as much of a hole as the Wrightsboro Road Kroger.

And wow, is that an understatement.

Dude, the Columbia Road Kroger is upscale. Seriously, they have a Starbucks in there. The deli is gorgeous, the aisles are wide and fully stocked, and they have literally everything I look for in a grocery store. They even carry the brand of rice I like, which normally I have to go to Asian groceries for! And I was finally able to find rolled up, refrigerated pie shells…I haven’t seen them at Evans Wal-Mart, well, ever, and I’m still not sure why.

The produce section was well-stocked and everything looked delicious. And they had pumpkins. For $5! They were so cute, I bought two. Not too big, not too small, the perfect size for sitting around to remind me that it’s fall. (Or that it should be fall, anyway.) I saw a neat idea about using doilies as painting stencils for pumpkins in this month’s BH&G, which I may try out.

Wow, it is just so cool to feel like I have energy, and to be so enthusiastic about things again.

When I say “feel like I have energy”, I mean that while I am starting to feel like my old self, I’m still getting exhausted after minimal exertion. I don’t know if I buy Dr. B’s “out of shape” argument, at least not entirely. We’ll have to wait until all the GERD symptoms are handled before I can be sure. But that walk through the grocery store certainly wore me out.

The second coolest thing about the shopping experience was running into a former coworker, Rebecca, in the parking lot. I could feel my skin turning clammy and sweaty while we were standing there talking and I felt so gross. But it was still cool to see her, and meet her boyfriend.

When I got home I had planned on making spaghetti, but it took a lot out of me to get the groceries inside and put away, so I decided to relax instead, and ate some Kroger brand cottage cheese a little later. It was oh so good. I followed it up with a small glass of delicious apple juice. Ahhh, this is life.

Since I won’t have any errands holding me back tomorrow, I should be able to make the spaghetti. Mmm.

That’s another thing that’s been nice…finally feeling up to eating regular food, instead of just warm or cool smooth things.

I also have a theory about the acne. During much of this time, it has been gross to drink water due to the throat gunk. It was just like drinking the taste of throat gunk. So I’m pretty sure I was dehydrated like crazy, and I think that did bad things to my skin. Yesterday I started drinking a lot of water, and the acne seems to be declining. Thank goodness.

Upswing?

Hi there!

So last night, around the time I should have been going to bed, it occurred to me that I felt better.

I had done nothing all day but read manga and articles about pop culture over at Cracked. For most of the day I was miserable, feeling tired and gaggy and dizzy when I stood up. I’d managed a few bites of my dinner–steak, from a Mexican restaurant–and was just trying to keep it down. But all of a sudden that wasn’t an issue anymore. In fact, I found myself hungry again.

I ate a little more of my food, and I also ate a bowl of strawberry mini wheats cereal, while I continued reading and chatting with friends. It was a lot of fun. I stayed up extremely late, just reveling in not wanting to die. I told Brooke, who by that time had awakened for her Sunday morning, that I was afraid that if I went to sleep I would feel bad again. But eventually tiredness won out and I crawled under the covers.

I awoke not feeling crappy. In fact, I felt good enough to actually do things, like clean up the sink area in my bathroom, load and start the dishwasher, and start a load of laundry. I have the gross taste in my mouth, and a bit of sinus pressure, but I don’t feel overwhelmed by it.

I read about Kimono Karen’s amazing trip to Hawaii and for the first time in weeks thought that maybe I will be healthy enough to do something like that someday. That’s pretty big given that just yesterday, when I was miserable, I realized I no longer felt like I could do anything I wanted to.

“Do I really feel better?” I wondered last night. “Or do I just think I feel better?” Then a better question occurred to me: “Does it matter?”