The Anemia Diaries
Those ultra-brainy philosophers walking around in a mental fog; those cyberpunks who want to merge with the Net, achieve cybergnosis and leave the "meat" behind in some kind of digital ecstasy; those mavens of the mainstream culture who are all head no heart; those poets who think it's all a mental puzzle box game; those writers who are so locked into their words that they forget they have lungs; those denizens of everyday life who live in their heads all the time, and forget they have bodies, or wish to.
None of that. They're all wrong.
That the mind and body are one has been brought home to me, forcefully, this past week, with events that serve as a reminder I'm not likely to forget any time soon.
Before I go any further, this is going to be one of those rare personal essays wherein I give more information about what's been going in my personal life than I usually reveal. The reason is, there’s a good story here, and some good lessons, that emerged out of the adventures of the past few days.
Another thing I rarely do, I also do here, that is: to write this in diary form. A lot happened in a short period of time, and even leaving out the inessentials, it’s a bold tale to tell.
Monday, May 24
Last night was a rough night. I think I have another ear infection. Swallowing is incredibly painful, yet I must do so regularly, because fluid is draining into my mouth from my eustachian tubes, or sinuses.
Today I went in for a doctor’s visit. The urgency was the pain swallowing, but I also wanted to talk over everything that’s been piling up these past few weeks. I have been feeling progressively more tired and sick for months now, and life had become an uphill struggle, a depressing daily grind just to survive. I felt like I was getting worse, and I wanted to talk things over. Because my mind was feeling foggy, I even wrote everything I was concerned about down, so I wouldn't forget.
The doctor visit was good, actually very reassuring. My concerns that could be addressed were addressed, or at least acknowledged. There are still some things in play. I was in misery, because the night before a growing pain when swallowing had blossomed into what the doctor discovered was a fully-blocked eustachian tube (which at first I thought was an ear infection), and swallowing that day was literally making me double over in pain; so I had eaten almost nothing. They irrigated my ear, and gave me some drops to help with the blocked tube, and by nightfall the pain had decreased enough that I could eat. (A few days and drops later, I can swallow without pain for the first time in a week.)
The clinic also drew some blood, to run some tests, and check on where my various levels were. The last time blood had been drawn, a couple of months prior, I had been slightly anemic, but otherwise my bloodwork was quite good. (My doctor has more than once told me that, despite my chronic illness, I have the bloodwork of a healthy man much younger than I am.)
Later in the day:
Feeling like crap. Hours spent at the clinic and at the pharmacy waiting to see people, and the follow-ups, and finally getting my meds. I actually was so tired at times that I managed to almost nap. I’m home again now, and I’ve actually turned on the air conditioning, to cool off the house somewhat. As much as I love this unseasonal tropical heat, I can’t handle it when I’m this weak and sick. The doctor and I went over everything I’m concerned about, all the past medications, my current foreground pains and worries. I got some clarifications and questions answered, and feel better about things.
It still hurts like hell to swallow, and I’m tired out from the pain. Now I’ve put some prescribed drops in my ear, and hope that I’ll be able to sleep without too much pain tonight. Also a migraine brought on by this long stressful day. So, pills taken, eardrops done, resting now, in the cooling air. Even with the AC I’m not going to cool it down to ridiculous levels; just below 80 is fine, down from 90-plus outside. In the evening, in the cooler air, I’ll turn off the AC and open the windows again for the fresh air.
I am so wiped out. I’m taking the rest of the day off. I’m trying to get some blood sugar in me; it’s slow going, because of the pain when swallowing.
Later, late night:
Two rounds of ear drops and the pain is thankfully greatly lessened. I’m drinking chamomile tea, and getting ready for bed. Another round of drops before bed, then hopefully I’ll sleep like a log. It was a tough day. But you know, I don’t fee depressed, and I don’t feel despairing. I’m not ready or able to jump up and down in glee, just yet, but I don’t feel like hell either. I feel pretty good, relatively speaking. I got through a very challenging, painful day.
Tuesday, May 25
Well, I said I was sick. . . .
And now I’m in the Beloit Hospital tonight getting two units of red blood cells.
I went in to see my doctor at the clinic yesterday, because I have continued to feel bad ever since March, and wasn't feeling like I was getting any better. Also, starting Sunday night I had a bad earache and extreme pain when swallowing; I've had ear infections before, and it fit the pattern. It turned out that it was a blocked eustachian tube; they irrigated my ear, and gave me some drops, and I felt much better by bedtime last night.
But they also drew some blood for some tests, just checking stuff. The next afternoon, today, I received a phone call from the clinic nurse, telling me to drop everything, get to the hospital Right Now, so that could give me a transfusion of two units of red blood cells. My red blood cell count was dangerously low.
This is not the sort of thing one likes hearing on the phone while waiting to check out at the grocery store. But I followed instructions, dropped everything and drove to the hospital Right Now.
Apparently my CBC (red blood cell count) was 6.4, which is half of what it's supposed to be. Apparently, my chronic illness, which involves bleeding ulcers in the colon, had depleted my blood count over the past few months to the point where I was two quarts low and needed a refill. Who knew? The leakage was gradual enough that I had adapted all along the way, and even though I felt bad, it was normalized, not a radical change. It's amazing what you can come to think of as normal, if the process is gradual enough.
(taken with my camera phone, since my camera was at home)
The hospital bureaucracy was a real mess. I was supposed to be an outpatient, but it was late in the day before I got the message, so then they wanted me to check in overnight. Which is fun when you're unemployed and have no health insurance. Well, I'll have to deal with all of that later.
My status now, some hours later, after I’d been given a bed, changed into a gown, and they started the transfusions, is that they did switch me back to outpatient status, but still I'm in a bed in a shared hospital room, receiving two units of blood. I'll be going home tonight, but it will be really late at night. I’m okay with that. I don’t want to spend the night here. A friend will take me home if necessary. It'll probably be 2am, but I'll be in my own bed for the night, and resting better.
The nurses say that I may actually be okay to drive myself home; after all, the transfusion should bring me back to a semblance of normal strength. They gave me a Benadryl, and they do monitor the start of each bag of red blood cells, to be sure there’s no allergic reaction. The nurses like me, and I like them; it comes from being a doctor’s son, I know all the gallows humor that hospital staff have to keep themselves sane. The nurse sits with me as each bag starts, to monitor. Your blood pressure goes way up for a few minutes, as the inflow raises the pressure; these are the highest BP readings I’ve ever had, 178/80, for example. Then they come back down to normal, as the flow steadies. It’s a very strange sensation, feeling, the pressure of the saline and red blood cells mixed, going into the back of your hand, where they finally placed it IV; they were better able to thread the vein there. I could feel the pressure of the fluids coming in, and I could taste salt and sweet in my mouth as they began. I sat there thinking: who owned these red blood cells originally? where are they from? And I felt deep gratitude, even as I also felt that I was being invaded by something foreign, alien, not yet mine. I guess that it takes a few days for the red blood cells to incorporate, and stop feeling alien.
My imagination veers over to an X-Files scenario, where these new cells are fizzing, full of nuclear energy, acid-green-glowing supercharged modules coming into my bloodstream, taking it over, mixing it in. I swear I can feel some aura energy left over from whoever originally owned these cells; like a lingering static charge. You lay there in bed, and takes a couple of hours per bag to get them into you; so you have lots of time for your imagination to wander.
In the morning, I'll go over to the Health Center and get another blood test, to check levels, and if they need to they'll give me another unit tomorrow.
Well, I've been bleeding from the ulcerative colitis since last October, since this current episode began, so this has snuck up on me. It sure explains why I've been feeling tired and sick these past few weeks—feeling worse and worse. I guess it crept up on me gradually enough that I didn't realize. So here I am.
I'm not asking for anything, except maybe for some good thoughts to be sent my way. I could use the spiritual support. I just wanted to let some people know what had happened. I almost don't want to tell anyone, but I don't want to do the Stoic Norwegian thing anymore. So, thanks, and help.
I'm not feeling depressed. I'm stressed but not freaked out. I like the nurses, they like me, because I can give hospital humor as good as they can—it helps having had a doctor for a dad, I've been around ER humor forever. A couple of the nurses have said I'm a real pleasant patient, I guess because while I ask questions about everything I also cooperate. Actually, I do want to get this done, and go home, and I do feel better.
It's funny—I'm not depressed, not even ia little bit. Even with this massive IV sticking into the back of my left hand. (It doesn't slow down my typing, yippee.) It helps to know that I'm supposed to get out of here tonight.
Hope your day was way more fun than mine.
Wednesday, May 26
They filled me up with two units of red blood cells, and let me go home, after all, at 2am. I was able to drive myself home. I actually felt really good, and newly energized. They say that's normal. It's also normal to get a "hot flash" when getting a transfusion, and I did get that.
Halfway through the second bag of red blood cells I felt my brain come back online. I felt sharper of mind than I have in months. It was like a switch was thrown, and all my mental and spiritual circuitry was re-energized, powered up again. I guess I’d been operating on a trickle of power for a long time, and hadn’t even realized it.
Today I went over to the Health Center, where they drew some more blood, just to check my CBC. I also spoke briefly with the doctor again.
I feel ridiculously energized. Almost too much. I feel giddy, and I talked too much at the Health Center, like I was wired or manic or over-caffeinated. I freely admit that it’s hard to trust this giddy manic energy. The contrast between Before and After is incredible. I haven’t felt this energized in months, probably since sometime last year. It’s a little overwhelming. Maybe this is how it feels to be manic, if you’re a manic-depressive. I feel like I can do anything, even though I’m restraining myself from doing anything too stupid. It’s not an entirely comfortable feeling, and I don’t entirely trust it.
I drove around town doing some errands after being at the Health Center, and I realized my senses were much sharper, and I was more attentive while driving. Again, the Before and After is a big contrast. My mind is so much clearer today!
I’m trying not to overdo it. I came home and rested for awhile. A little later, I want to do some weeding in the front garden; I’ve neglected it for weeks, because I just haven’t had the energy.
I wonder how long this fizzing energy buzz will last? All those little alien blood cells, fizzing through my veins, giving me the strength of ten.
Thursday, May 27
Another hot day. I’m feeling tired from the tropical heat. I’m sitting on the porch, a little thoughtful and quiet this morning, slowly drinking my orange juice.
It’s starting to hit home with me that I dodged a bullet. It could have been much worse than it was. I just missed an incident that could have been genuinely life-threatening. So today I’m feeling quieter, less giddy, more thoughtful.
I’m feeling tired again, but it’s “normal tired,” not “anemia tired.” The weather this week is record hot, temps in the 90s all week long, and that’s always tiring for everybody, anyway.
I think I overdid it yesterday. My back is a little sore, possibly from weeding in the garden in the late afternoon, in that burst of energy I was feeling. I probably did too much, and thus overdid it. I’ll pay for it with sore muscles for a few days—but those muscles have been idle for many weeks because I didn’t have any energy at all, and was exhausted all the time. Now, today, I don’t mind a little soreness, because it’s a signpost on the road back to something like normality.
Still, I have to stop and think about things today. I still feel more energized, and stronger, than I have in weeks or months. I’m just feeling a little more mortal, as well.
Friday, May 28
Writing a letter this morning to my family and friends, about all this, a summary, an update, a warning to myself of my own mortality:
Don't ever let anyone convince you there's no connection between mind and body. The next day after the blood transfusions, when I woke up, I was really energized, fizzing with alien bloodcells (sounds like an X-File, I know), and charged. I got myself over to the Health Center for another blood count, and a brief talk with my doctor; they were going to run the test, then let me know if I needed another unit of blood. I haven't heard anything yet, so I'm guessing my blood count is okay, at least for now. Anyway, I had such renewed energy yesterday that I was practically giddy at times. This anemia had probably come on so gradually that I didn't realize, it had started to seem normal, and the contrast between Before and After Hemoglobin has been intense, even shocking. Like I said, fizzing, and giddy. I got a lot done yesterday.
I'm also wondering how much of the feeling sick and tired and crappy over the past couple of months was really all about being anemic. I suspect more than I realized. I'm going to pay close attention over the next few days, and see what feels different.
Today I mostly rested. I woke up feeling tired—but normal tired, like you might feel after tiring yourself out the day before from having worked to satisfaction, not like super-low-energy-illness tired. I may have overdone the physical exertion yesterday. I did a little weeding in the garden, and grocery shopping. I may have overdone it, because my lower back and my bad knee hurt today. I'm going to have to watch that, and not overdo it anymore. This is going to take getting used to.
The next thing to deal with is plugging the leak, as it were. I'm seeing the GI doctor in a few weeks, and then my regular doctor again. (Medical bills are going to start piling up for me, which has me a little worried, but so far not totally freaked out or panicky. And I don't feel depressed, either.) This might take time to work out. I've got the forms to apply to the Hospital for financial assistance, and I'll get them figured out over the next few days, with help; those kind of forms are challenging for me, at the best of times.
Also, my mind feels much sharper than it has in a very long time. I realized yesterday that I had sort of come back "online" mentally, and all my senses were super-sharp again, like when driving. The transfusion has really made a difference. Now I just need to go on from here.
Anyway, that's the news. I just wanted to follow through with an update. I feel much better now! I think I’ll go for a walk!
Saturday, May 29
The Memorial Day weekend. I plan to avoid the crowds. I went over to the Veteran’s cemetery, though, where they always have a beautiful flag display this time of year, and made some photos. I also finally located the gravesite of a couple who had been family friends, in my Dad’s last years, and who had themselves since passed over, from age and illness. It was a quiet hour communing with the beloved dead.
I’ve been sleeping well. So well, in fact, that I wonder if all that insomnia I’d been having for months was related to the anemia. Other things are also not bothering me like they did.
I’m not well yet, though. I still have bleedings. It seems wasteful to be given two bags of blood, then continue to bleed it out again. But that’s my chronic illness, for now, still active, not fixed. I see the doctors again, soon, and my goal now is to stop the leak, and get well. All my focus is on that, for now. It’s more than enough to cope with.
In the meantime, I have all this renewed energy. So I am working on art projects and self-marketing projects (such as material for selling my photography services for weddings, etc.), while I have the clarity of mind and focused strength to do it. I’ve made great progress, this past week, on choosing photos for a possible future expedition, and getting them printed. I feel alive, again, even if there is still a shadow on the horizon.
So I’m working as much as I can on those projects that will hopefully help me move on with my life, once I’m well. You can’t wait to do this stuff till alter; you have to do it now, even as you might have to spend more time in hospital. If you wait to do it till you feel all better, or until you’re cured, you’ll never start, and you’ll never get it done. No waiting. Just get on with it. And, to be honest, it keeps my mind focused on mostly positive things, and keeps me from worrying too much.
Honestly, I still don’t feel anything like depression or despair; some worries on the horizon, some anxieties, some late-night phone calls to friends asking for moral support. But nothing like before. Nothing like the void, the abyss, the dark night. There have been lessons emerging as fast as arrows shooting by, if I can but catch them out of the air. Some of the lessons are very grounded and simple: Don’t worry tonight about what you can’t do anything about till tomorrow, anyway. Just let it go, and pick it up again when it’s time. Meantime, make of the day what it can be.