November 8, 2017

Just Can't Stop

I can’t stop the tears. They just flow out of my eyes and stream down my cheeks and drip off my chin. I’m not sobbing. I just can’t stop the tears. The same way I just can't stop my heart.

I know it sounds silly. I mean, 6 years have gone by with no answers so it’s not really shocking when the doctor says, “There’s really not much else we can do.” But somehow it crushes my spirit anyway. It’s like I’m a balloon and all the air inside me has just been let out. I’m left wrinkly and deflated. Because I get up and I go to appointment after appointment and test after test and I hope and I hope. Maybe this time they will find evidence. Maybe this time will be different.

All that hope, wasted. Again.

I choked it all back as I sat there under his watchful gaze, willing myself not to let my eyes fill more than they already had, willing the tears not to spill over the edge of my lids. I stared at the pink poster on the wall across from me and blinked, trying to get the tears to retreat back into my eyes and I swallowed and I waited until I had control of my voice before opening my mouth to say “thank you.”

And then I made a joke and laughed like I was fine, like it didn’t matter to me when really I just wanted to cry and ask What am I supposed to do? But I already know the answer because the answer is to do what I’ve already been doing all these years.

You just go on.

Somehow you wake up every morning and you get up and just go on. You take your half-life and try to make something out of it and even though all the disappointments have weakened the walls of your hope, you blow that stupid hope-balloon back up with more hope, only you do it more carefully now. You want to hope that this time you won’t fail at living this half-life or that you will be braver or that you will start to feel better or that one of the other doctors will help, but instead you will hope these things with a little less conviction. A lot less conviction. Or maybe not at all. But no matter how weak or nonexistent your hope is, you will just keep living, the same way you just keep breathing even when it doesn’t feel like it is worth it. You will just keep putting one foot in front of the other. Because what other choice is there, really? 

June 5, 2017

The Difference of a Year


I woke up this morning to the sensation like a gorilla or a refrigerator or something really really heavy was crushing my legs. I wake up to this sensation more often than I care to but it's not just a morning thing. Sometimes it starts mid-morning. Sometimes afternoon. Sometimes evening. Sometimes it keeps me up most of the night. It is a pretty awful way to wake up though.

I've been trying to decide which is worse: waking up to this crushing sensation or waking up to the sound of someone clapping loudy and shouting, "Time to Get Up! Get Up! Get Up! Time to Get Up! Get Up!" in a sing-songy kind of voice. Some energetic lady (someone's mother maybe? Or a teacher aide? I don't remember) woke all the girls up this way on our 6th grade overnight trip.

I can't really decide which is worse. They are both pretty jolting ways to wake up.

On the one hand, I prefer the pain. It starts out mildly and brings me along with it until I can no longer stay asleep or keep falling back to sleep despite it. Whereas being shouted at, well, that's just dead quiet to "what-the-heck!?" like a lightening bolt.

On the other hand, being shouted at is jarring initially but after your heartbeat slows back down, the whole ordeal is over. Nothing but a memory. An unpleasant one, to be sure; I mean, I still remember it almost 30 years later. (Goodness, doing that math made me feel old.) But the crushing pain...that's not over once I open my eyes. The distant memory part of this hasn't happened yet.

Still, if some woman woke me up that way every morning or even just with some regularity, I'd probably start throwing things at her and screaming back.

I don't really want to beat the tar out of my legs for hurting though. I just want them to stop hurting. And even more than that, I want to understand why they hurt. No one has been able to explain it yet.

Ultimately, I guess what I'm saying is: I have more compassion for my leg pain waking me than I have (or had) for a woman shouting me awake.

So I guess that's settled.


I got up this morning when it woke me. I told my clones "I love you," before they went to school. I'm not awake for that as often as I'd like to be. Mr. A had an eye appointment to go to so I said I'd go along. By the time we left, my knee was also bothering me, there was clear inflammation going on and my skin was feeling overly sensitive.

When we got there, Mr. A parked and I grabbed my fold-able cane that I keep in the van. I haven't used it in a long time because I haven't been needing it lately.

I sat in the waiting room, knitting, while Mr. A had his eyes checked. It felt pretty surreal to be sitting there in that office. I haven't been there in years but we used to take clone 2 to the eye doctor every month when he was a baby, every 3 months when he was a toddler...

I was so thankful when we found this ophthalmologist because clone 2 was born with a rare eye condition (1 in 10,000) and the lady we had initially been seeing had never seen his condition in real life before. She spent more time treating him like a lab rat than anything else. So when we found this guy and discovered he had seen clone 2's condition before and knew what to do...well, we were pretty happy. I used to take homemade cookies and pies to the office staff. That's how thankful I was. And spending so much time there, we got to know the doctor pretty well.

Anyway, I was knitting today and having all these flashbacks, and one memory seemed to lead to another. Before long I felt like I was doing a survey of the last lots of years. So many memories today.

We ran some errands after the appointment and I was walking around with my cane, realizing I bought it about a year ago. I was so embarrassed about it at first. I used it only at home, while I worked out how to move my arm in line with my opposite leg. You might not think there is any kind of a learning curve to using a cane but if you want to use it right and actually benefit from using it, there is.

But even after I got the hang of it and looked fairly natural using it, I still didn't want to be seen out with it. I was uncomfortable with the thought of being in public with it but even more afraid to show up with it somewhere where people knew me. I anticipated stares and questions and who-knows-what-else.

I remember I stuck it in my purse one day when my mom was visiting. She and I were going to the thrift store together and I was afraid I might get dizzy while we were there. Instead, my legs got tired and I took it out of my purse and unfolded it and finished our shopping trip with it in my hand, supporting me. That was the first time I had used it in public.

But I remained afraid to show up with it where people knew me.

I can't remember how long that went on. But at some point I took my cane with me to a soccer game or some other school event because I needed it.

And of course, it wasn't as bad as I'd anticipated.
Things never are.

It's hard to believe that was a year ago. I haven't been using my cane much lately, as I said, but when I do use it, it still feels very much like a part of my body. We're buddies, me and this piece of metal. And I feel pretty silly for ever having been so worried about using it in front of people.

The thing is, it helps me. I wouldn't have been able to do all the walking I did today without it.
That is not something to be embarrassed about.

It's like clone 2. If we hadn't done all the things the eye doctor told us to do when he was little, he wouldn't have the nearly perfect eyesight he has today. All that work helped his eyes. And maybe not every kid needs to go through what he went through. Just as most people my age don't need a cane. And that's fine. But those of us who do need aides of various kinds, we need to feel confident and empowered knowing our tools and aides are helping us live full lives, helping us do some of the things we want to do, helping things, in some cases, to improve.

Now, at this point in my journey, I'm embarrassed that I was ever embarrassed about needing a cane.

People might stare.
            And they do.
People might ask.
            And they do.
People might not understand.
            And that's okay.

Because it really doesn't matter what other people think.

March 6, 2017

Acute Infections and Emergency Rooms

Two weeks ago I had to wake up Mr. Amazing at 2:30 in the morning to take me to the emergency room.

We left the clones sleeping in their beds. They had already witnessed me, earlier in the day, struggling to breathe and it scared them. It scared me as well but I didn't do anything about it.

I should have gone in earlier but I didn't know. It crossed my mind a number of times throughout the day that maybe I needed to go to the emergency room. For one thing, I was getting ridiculously short of breath whenever I stood up. If I took more than one step, things became severe. I tried to go from the couch to the washing machine but half-fell half-slumped to the floor less than half the way there, gasping for breath. I couldn't lay down flat either. Mostly I just sat on the edge of things, in a triangle type pose, trying to breathe through what we all just assumed was an unprovoked panic attack on top of an acute infection. (The nurses at the hospital later told me that was exactly the right position to sit in to try to open up my airway a little, though at the time it did very little for me.)

Everyone else in the house had gotten this infection as well and it was mild for all of them. So it seemed like nothing to worry about.

Mr. Amazing drove me to the convenient care first but I guess that is not a 24 hour clinic so we tacked on another 20 minutes to get up to the hospital. I leaned forward in the seat, staring at the floor, not caring that I was getting car sick because motion sickness is relatively meaningless when you are pretty sure you are suffocating and going to die.

We got there and I tried to get out of the car, forgetting that standing was an issue. Mr. Amazing rescued me by picking me up and carrying me inside. He then got me a wheelchair and wheeled me over to the ER.

Triage asked me a lot of questions. Most of them I had trouble answering, not just because I was struggling to take a deep enough breath to enable me to say more than one word before needing to gasp again, but also because I couldn't think very well. Everything seemed blurry to my eyes and fuzzy to my brain. I later found out these are signs of lack of oxygen.

They asked me to pee in a cup before helping me. Mr. Amazing wheeled me into the bathroom and I got up but then I started dry heaving into the toilet, which is pretty awful on its own but even worse than you can imagine when you're short of breath. These two things really don't combine well at all.

Eventually I made it to my designated location, bed 19. My oxygen levels were down in the 80's so they put the oxygen tubes in my nose and blasted the oxygen in and things started to get a little easier.

"No wonder you are having a hard time," the ER nurse said.

I asked her if I was stupid to have come to the ER because I was still feeling like maybe I was just being really dramatic about something minor. She told me, "No. You absolutely did the right thing. You need to be here. Something is very wrong. But for the future, call an ambulance. That way you can get oxygen right away."

I felt less like a lunatic after that and more like I should have trusted my instincts earlier in the day.

Respiratory came and they started pumping me full of albuterol through an inhaler. Then my heart rate went sky high. 150 beats a minute. My body started twitching--and not like the myoclonic jerks I've grown accustomed to--and I said, "I feel really awful and weird."

Respiratory J kept his back to me and said, "Oh, I forgot mention...this might make you feel an impending sense of doom."

"That's an understatement," I said. And then I laid there thinking, for probably the fiftieth time that night, that I was pretty sure I was dying but this time I felt sure that the world was going down with me. I figured all the medical people around me would take care of me though, at least until the sky fell.

"Just try to calm down," Respiratory J said to me.

I kind of wanted to punch him. I was growing tired of hearing those words: "try to calm down." It wasn't really a matter of not being calm. Still, I tried to think of calming things like kittens and my children but that didn't help either. Probably partly because we left them at home and who knew what horrible thing might have happened in the time since we left. Maybe the house caught on fire or one of them woke up with a bad dream and tried to come to us in our bed but instead found no one was there...

I put my mind on my breathing instead. It wasn't easy breathing but it was easier than before and Thich Nhat Hahn would tell me to just focus on the air going in and the air going out. Breathing in I feel calm. Breathing out I am at ease. I tried to fool myself and wait out the racing heartbeat but it just kept going.

Next Respiratory J said he needed to do an ABG. I didn't know what that was so he explained that it was an arterial stick and that it would be more painful than having blood taken from a vein. He said, "Have you ever banged your funny bone? This feels like that only about 1,000 times worse."

That did nothing to lower my heart rate, let me tell you. I tried to fool myself again. It's just another blood draw. No. Big. Deal. But let's face it: anticipation is the worst.

He was right. Something about it does actually feel very similar to banging your funny bone but also worse. Not quite 1,000 times worse. Maybe more like 20 times worse.

He left and an Internist came in, Dr. B, who started questioning me thoroughly. I told him all about what proceeded my arrival at the ER and also about the past 5 years. He said, "I won't begin to guess what is happening chronically. It's not my place to figure that out but I'm looking into the condition of your heart." He said it wasn't the albuterol that was making my heart race. I guess it had been beating pretty hard all along. But I thought it was kind of ignorant of him to assume this had nothing to do with my chronic issues.

He ordered an EKG. Some girl stuck little things all over my body and hooked them on to some wires and then her machine did its thing and it was over in a matter of minutes and all I had to do was lay there. Then she took the wires off but left all the sticky things on my body. They don't seem to care too much about removing those kinds of things.

Following the EKG they took some more blood but fortunately they took the blood straight from the IV line that was already inserted in my arm so I didn't have to be stuck again.

Dr. B left for a little while and I had to pee but I couldn't make it to the bathroom (with or without oxygen) so the nurse wheeled a portable toilet into my not-so-private room right up next to the bed. She unplugged me from a couple of machines but not the oxygen and then pulled a curtain behind her as she left. Mr. Amazing helped me from the bed to the little toilet and I sat there in my flapping gown feeling like a decrepit and feeble lady. I could hear all kinds of doctors and nurses and aids talking on the other side of my curtain and felt completely exposed and dependent and small. And I thought, this is a low point in my life.

After crawling back into my bed and being hooked back up to all my machines, the nurse threw two more warmed blankets on top of me because I was freezing. My feet and half way up my legs were like icicles. By then I was covered by about 6 blankets.

My nurse told me that I was negative for the flu and pneumonia which she said was shocking to her considering how sick I seemed. I laughed and told her I'm really good at passing all these kinds of tests and having nothing be wrong with me when something is clearly wrong.

She asked what I meant so I told her my story and she patted my arm and said "5 months is a long time to be sick. I hope we can help you."
And I said, "If I said 5 months, I misspoke. It's been 5 years."
And she said, "Oh My God," and I said, "Yeah."
And then she left because we were in the ER and they have a lot of people they have to take care of.

I tried to sleep a little because I was exhausted and had been awake almost 24 hours but I couldn't sleep because the machine that was monitoring my heart was constantly beeping because my heart rate was too high and had been since the moment I arrived and probably before that.

Dr. B came back in and said that I was showing signs of pericarditis which is just a fancy way of saying there was a lot of inflammation around my heart and he said that I needed to have an echocardiogram and that they were going to admit me and take me upstairs to the floor where they put people while they try to figure out what is wrong with them. And he said that depending on how the echocardiogram looked, I might have to have a CT done of my chest because they were starting to wonder if I was having a blood clot or something. Then he made a big deal about not wanting to expose me to radiation because of my age and putting me at risk for breast cancer and I tried really hard to listen to everything he was saying but all I kept thinking was I am older than this doctor. I could practically be his mother.

After he left I told Mr. Amazing to just go home. He looked so tired sitting over in the corner in what looked to be an incredibly uncomfortable chair. It was almost 9 a.m. by that point and I knew the clones were up by then and probably wandering around the house wondering where in the world their parents were. Mr. Amazing looked like he didn't want to leave but he also looked like he didn't want to stay. And I felt bad because he was tired because he had to drive me to the hospital in the middle of the night when he should have been sleeping. And I knew he couldn't just go home and go to sleep. The clones both had orthodontist appointments before lunch.

I felt awful about the whole thing. I have really bad timing when it comes to things like this. Not that there is ever a good time to need to go to the emergency room. But if there is a worst time for me to have an issue, that's probably when I'll have it.

So he finally left and I went back to trying to will my heart rate down and fall asleep.

My nurse came back in to check on me and then some guy came in and stuck more sticky pads all over my chest and hooked some more wires up to them. Then another lady came in who was wearing some kind of overpowering perfume and she was leaning over me because she was trying to fix one of the machines I was hooked up to that wasn't putting out an accurate reading and at one point her phone started ringing in her pocket, right next to my ear. When she finally finished fixing the thing she pulled back and said to me, "Your phone is ringing."

I didn't even have my phone with me. I didn't think of it at 2:30 a.m. when we left the house.

"It's your pocket, actually," I said.

"Oh," the lady said and grabbed her phone and started talking loudly into it as she casually walked out of the room.

My nurse mouthed "I'm sorry," at me as they left and I smiled at her and shrugged because I didn't really care about anything much anymore except breathing. Breathing is a wonderful thing.

Eventually two sweet young ladies came in to my room and started messing with all the wires and machines that were attached to me. They told me they were there to transport me upstairs. I asked if I was going to have to get on a different bed or into a wheelchair or what and they laughed and said, "No one wants you to move. We'll just wheel you up on this bed."

They put the rails on my bed up and unhooked me from the blood pressure machine and the heart monitor but they somehow kept the oxygen flowing into my nose. They unlocked the wheels on the bed and then started wheeling me down the hall through the emergency room. And then I got kind of excited because I suddenly felt like I was on one of those hospital shows on TV.

When we got to the elevators I got a little nervous. I hate the way they go up a little too far and then go back down just a little because it always makes me feel nauseous and motion sick. I felt bad enough already. I didn't want to deal with motion sickness now that I could breathe again.

I said, "I hate elevators. Can we take the stairs?" And the young ladies laughed genuine hardy laughs with me as they pushed me into the elevator. And up to the 4th floor we went but I didn't even feel the elevator move. Not even a little bit. So I guess hospitals get the good elevators. But it did make me wonder why everyone doesn't go ahead and splurge for the kind that work so smoothly. Or why the elevator makers even bother to make the motion sick kind in first place...

They wheeled me out of the elevator and I really did feel like I was on a TV show except I was actually sick and not just acting. I was put in room 444 which I thought was pretty great because that's the kind of number I can remember, even when I'm sleep and oxygen deprived. But then it occurred to me that it didn't really matter if I knew what room I was in because I wasn't going to be leaving my room and probably no one besides Mr. Amazing was going to be looking for me anyway.

Another guy came in and peeled a couple of the previous sticky pads off of me and started sticking new pads on me and I thought about feeling self-conscious for a second but then I remembered that at least seven people had already seen most of naked-me and there were bound to be at least seven more to come so there wasn't really any point. And then I started having flash backs to when I was at the hospital to give birth to my two beautiful clones.

After he left, the nurse came in and she asked me if I was doing okay and I told her I was and she said, "Your heart is beating awfully fast," and I asked her how in the world she knew that since I was no longer hooked up to the machine I was hooked up to in the ER and she said, "All these little pads all over your chest are monitoring your heart and it tells me out at the desk." And as soon as she said it I realized that I could in fact hear a beeping coming from the hallway that sounded very much like the beeping that was driving me nuts down in bed 19.

I said, "Oh, that's me beeping at ya, huh?"
And she said, "Yes it is."
And I said, "It's been doing that since I got here."
And she said, "Well hopefully we'll figure out why."

A little while later a phlebotomist came in to get more blood and I tried to offer her the IV line again but she said she had to take it from a different location so I gave her my other arm and asked her to please not hit a nerve because I still worry about that ever since it happened last year. It was a pretty unpleasant experience. She promised she wouldn't and said she'd never once done that to anyone in all the years she'd been doing her job so I relaxed and tried not to worry about it.

After she left another woman came in with her fancy machines and started prepping me for the echocardiogram which turned out to be a pretty cool test. Basically, it is an ultrasound like when you are pregnant and get to see your baby growing in your belly like a little alien. Only this alien was my heart. And it beat in it's rapid erratic way and looked all ugly and I laid there thinking about how we always attribute all these feel good feelings like love to the heart and that it's kind of silly since the heart is actually such an ugly looking thing. I tried to pay attention to all the things the woman was telling me--she clearly loves her job, which is awesome--but I discovered that I'm still not very good at physiology. I mostly didn't understand a word of what she said but I went ahead and acted like I got every word.

After that a cardiologist came in and told me that my blood showed elevated troponin which is apparently something that shows up in your blood when your heart has been damaged, like when you have a heart attack. But I was so tired and, frankly, delirious at that point that I thought he told me that I had had a heart attack which, I'm not going to lie, totally freaked me out. He told me I had to have my blood tested again to see how the number had changed since the last blood draw in order to help them determine what was going on. "You may need to stay for 3 days," he said.
"Can I argue with you about that?" I asked.
"No," he said. "At the very least, your oxygen levels aren't stable enough for you to go home today."
"Who said I wanted to go home today?" I asked.
"We'll check in tomorrow," he said.
"Can I argue with you then?" I asked.
"I won't be here tomorrow," he said.
Well, it's going to be kind of hard to check in with me tomorrow then isn't it?, I thought. But I just smiled at him and nodded that I understood.
He left and another phlebotomist came in.

I offered her my arm and told her that unused veins were beginning to run short but that she should just pick one and even if it didn't look like a good one to just use it. I told her, "trust me, they don't look great but once you get that needle in there, the blood will flow right out like it was a perfect vein for the job." So she picked a pathetic looking vein that she could hardly see and stuck her needle in and sure enough, I was right. The blood came flowing out and filled up her vials quick as a wink.

She smiled at me.
"I've been through this a few times," I said. "I'm like a professional. I have blood tests done every couple months it feels like."
She raised an eyebrow and said, "That's no fun."
"I always pass," I said. "No one is better at getting negative test results than me."
And she laughed which made me feel good. I could almost pretend I had only come to the hospital just to spread some sunshine.

After that people started coming in less. I mostly started seeing aides who came in to check my vitals every so often. We shared jokes and short stories but they didn't stick around long. There was a whole wing of people who needed their vitals checked. I chatted with some women who came in to clean the bed next to mine after my roommate was discharged. They were so fast and efficient at everything they did. I wished I could clean my house as quickly and efficiently as they worked. "You've done this a few times, I take it," I said. They laughed and wished me well on their way out of the room. I saw respiratory a couple more times, whenever my breathing got to be too strained again, but they were careful not to give me as much albuterol as the first time.

I pushed the nurse button every time I needed to use the bathroom because they made me promise I would. No one wanted me walking by myself. I figured their fears of me falling or passing out were not unfounded. Just taking the four steps from the bed to the bathroom made me struggle to breathe, even though I took the oxygen with me. In fact, just going from a semi-reclined position to an upright position in the bed left me exhausted and winded. I kind of felt like I needed help with everything. If I could have had someone chew my food for me, I would have. Instead I ate a few pieces of fruit that I had to chew myself and then I was too tired to eat any more. So they offered me liquid food that didn't require chewing but more than anything I just wanted to sleep.

Everyone was so tender and caring, saying things like, "You actually have the harder job of the two of us," when I said that I thought they all worked so hard. I was truly surprised that nearly everyone I met was so pleasant and kind. I started growing attached to all these people. I wished they could just come in my room and keep me company.

In the moments between, it started to get pretty lonely though. And there were too many moments between.

The next time Dr. B came in he told me that the cardiologist had been wrong about the troponin in my blood. He said the first blood draw and the third blood draw were both at zero for troponin which meant the elevated levels in the second blood draw were a false positive. Of course I was relieved to hear that my heart was not damaged but I also was not surprised that my one positive test result was reversed. I mean, I am a master at getting negative test results. Seriously. It's reached a level of absurd I never could have imagined.

And then much later after that, when Dr. B returned again, he turned my oxygen off and told me I had to get up and go for a walk without it to see how my levels held and that if they stayed above 92 I could go home. Naturally, of course, my levels during my walk were pretty good even though I was completely exhausted and winded afterward. I didn't really feel ready to go home but I also didn't want to stay in the hospital any longer.

Then he started prescribing a bunch of medications. Steroids, anti-inflammatory's, a special med to help make sure I never get pericarditis again...

I thought it was kind of ironic, seeing as how I just wrote a blog about taking medications. I wasn't thrilled about this situation though. I happily take the med that helps relieve some of my chronic symptoms but I'm still not a big fan of pumping a bunch of stuff into my system. I still worry about side-effects. I still feel like less is more. Of course, I also feel like not being in the hospital with heart and breathing problems is a good thing.

When my nurse came in she said, "Too bad you're being discharged. You're our best patient."

I beamed at that. Though I was a little sad about being discharged as well. I truly had become attached to these people. I didn't necessarily want to be in hospital but it was really nice having people to talk to throughout the day. I enjoyed making people smile and laugh and connecting with people. I enjoyed hearing their interesting stories during their moments in my room. And I knew I was going to miss the oxygen. I already missed the oxygen. Even though my saturation levels said I didn't need it anymore. I'm pretty sure the oxygen saved my life and I was really afraid the whole thing was going to happen again when I got home.

When I got home, Mr. Amazing set me up in the bedroom with everything I'd need right next to me. And then he went back to keeping the house running and keeping everything together and I was alone in my own bed still too sick to do anything. And I wondered how long this was going to last. I flipped through channels on the TV and felt the spiral of depression come and begin to swirl around inside my head and settle in for the long haul.

But we'll save that part of the story for another time.

February 17, 2017

On Being Medicated

In my former life, I was never a big medication taker. I was reluctant to even take an over-the-counter painkiller for a headache because I felt like the painkillers were just masking the pain and if I had a headache, I preferred to know about it. So unless something truly severe was going on, I preferred to just feel it and deal with it, knowing it would eventually go away.

I may not be a pill popper under normal circumstances but chronic illness is not a normal circumstance. It's a different story when the offending feelings are a daily thing. Daily symptoms get old fast. The pain feels worse, not necessarily because it is off the pain chart but because it just keeps going. There is no end in sight.

I've tried a number of medications over the past 5 years and none of them made me feel any better but most of them did plenty by the way of side effects. Mr Amazing lovingly refers to me as side-effect girl. I don't usually get the really bad side effects of a medication (ulcers, liver disease, death) but I do often get the lesser side effects that just add more discomfort to an already full pot. Plus the meds most often prescribed to me usually have all of my symptoms listed as possible side effects and it can become difficult to tell whether or not my body is causing a symptom or if a medication is causing a symptom. For example, anti-dizzy medications warn that they may cause dizziness. (Oh, the irony.) And sure enough, I always felt dizzy (or more dizzy) when I took them.

A few months ago, my Rheumatologist prescribed a medication for me to try. He prescribed the lowest dose possible to be taken at bed time only. And to my surprise, it seemed to help with only one minor side-effect: drowsiness. 

When I saw him next, I asked my Neurologist to increase the dose a little and let me try it during the day. He obliged. 

I'm still on a low dose and it doesn't take everything away but it is making my life feel more manageable at times and I've even had a number of days where I can say I felt good, which really means something. My good days per month were dwindling to a measly one or two if I was lucky. Now, for the most part, I'm having at least one good day a week and have even been caught on a couple of occasions using the word great to describe how I feel.

Again, that's really saying something.

Even though I'm being helped by this medication, it's kind of scary to tell people about it because there are some people who feel that prescription medications are a form of poisoning or are the root of all evil or who feel that we, the chronically ill, should be spending more time hugging trees and being positive instead of swallowing pills. I'm not against having a positive attitude and I love nature but the fact is that sometimes marveling at nature and laughing isn't enough. Sometimes people need help because they are in too much pain to laugh or to go for a walk. Sometimes people need help managing their symptoms and no amount of star gazing or bird watching with a smile is going to change that.

I hate to think of people being alienated this way, shamed for trying to feel better.

Juxtaposed against that anti-medication position is the false sense some people have that medication can fix everything. Like the specialist I saw most recently who said to me, concerning my use of this new medication, "This means you are recovering."

I cocked my head at that.

In this instance, I'm pretty sure all it means is that I'm medicated.

Don't get me wrong. I'm incredibly grateful for this medication. It's just that if I stopped taking this medication, I'm 99.9% sure that feeling like the unmentionable pile of **** inside a porta-john would become my daily reality all over again. This completely negates the theory that I'm recovering.

I guess what I'm trying to say is that I feel like everyone just needs to take a chill pill (preferably prescription strength) and focus on the fact that medications and nature and positive attitudes are all aides for well-being. There is no shame necessary for whatever combination a person chooses to use in order to help relieve some of their suffering.

I'm using prescription medication but I won't be shamed about it. I've needed my cane less often. I haven't had as many days of tears running down my cheeks because my pain is unbearable. Pain isn't keeping me awake every night. The dizziness seems to be going on vacation periodically. I'm still having many issues and break through pain and bad days that leave me not wanting to move or think or exist. In fact, this whole week I've been incredibly sick and the meds haven't seemed to help at all. But there are moments now when I feel less sick and more like myself.

I'm medicated but I'm happy about it. And I will happily continue to swallow my pills while I search for answers and a path toward healing and recovery, which may include prescription medications, laughter and marveling at everything under the sun.

February 3, 2017

The Face of Chronic Illness

What does chronic illness look like? 

Does it have a face? 

Does it have a sound?

Do you think you can tell from a person's appearance whether or not they are sick? Do you think you can tell from the sound of their voice?

Our society has so many assumptions about what it means to be sick. There are friends who will call on the phone and at the sound of my chipper voice will be convinced that I'm well. There are acquaintances who hear of my illness journey and confidently exclaim that I don't look sick so I must not be. There are doctors who say I must not be all that unwell because I'm sitting in front of them smiling and laughing.

These assumptions hurt. They hurt me deeply and profoundly. They lack elements of compassion and understanding. They tend to make me feel misunderstood at best, not believed at worst. 

Often, I sound chipper on the phone because I'm happy to be hearing from the person who called. Hearing from someone I love, who wants to tell me their stories, it gives me joy. I might be feeling horrible that day or I might not. But because I sound upbeat, it's likely the person on the other end will assume I'm doing great.

Often, I'm laughing at the doctor's office because it's been 5 years and this whole ordeal has been completely ridiculous and absurd and more than likely, I was just told, again, that everything is normal and my chosen coping method is to laugh. But because of my laughter, my smile, I'm not taken seriously. The severity of my experience is undermined and I'm told "you seem like you are doing fine" or "you clearly aren't that sick."

Never mind that I'm smiling because over the past 5 years I've come to understand that my happiness is one of the only things I actually have control over. And with that knowledge, I am actively choosing to be a source of light. I am actively choosing to show up at my doctor's appointments with the intent to be a blessing in their life. I am actively choosing not to let this thing beat my emotions into the ground (too often) and to rise back up when it does. I am actively choosing to continue to hope even when it seems that all hope has been lost. 

I am actively choosing to smile and to laugh as often as possible.

Why should that make me less convincingly sick?

                                      ~

This is what Chronic Invisible Illness looks like:


But so is this:


















November 17, 2016

Post-Appointment Depression

photo by Ron Place
I walk in smiling. I'm not necessarily keen on meeting new people, especially new people who are doctors, but I know that after the first appointment they are no longer new and every subsequent appointment will be easier.

I walk in smiling. I'm grateful to be seeing this doctor. I'm hopeful that some benefit will come from the appointment. Or at the very least, I will be heard.

I walk in smiling. I like people. I want to be a blessing to everyone I meet. And I know that sometimes a genuine smile from one person is all it takes to turn a person's day around.

I walk in smiling. I know how this is going to end. But I walk in smiling.

I wait. I do it with patience, even while I wonder what the point is of showing up 15 minutes early, as requested, when I will end up waiting in a colorless room for 45 minutes beyond my appointment time before they get to me.

I wait with patience.

I speak. I try to be clear, even as I use unusual simile's and metaphors to describe things that I wish a person could just see or feel for themselves so I didn't have to try to explain. I answer their questions as accurately as I can, despite knowing that the answers to many of their questions are going to be what helps them form a picture of me as a person, of me as a patient, of me as whatever it is they think I am. Accurate or not.

I listen. I take it all in, even when I disagree with the assessment being shared. Even when I feel upset by the insinuations. Even when I only partially understand the things being discussed. Even when what is being said is not what I want to hear.

I thank. Regardless of the outcome, I'm grateful. I'm thankful that there are people in the world with the ability and desire to learn and understand things that are beyond my own knowledge base and even further beyond my interests.

I leave. I climb into the van and close the door. Mr. Amazing starts the engine and I listen to it's hum and we pull out of the parking space and head back toward home. I rest my head against the seat back and watch all the people driving by in their cars heading to who-knows-where. I stare at the trees as we zip past them on the road.

I hold back tears. Some of them escape and trace the lines of my cheek, my nose, my chin.

I blink. I think.

At home I write. I write to the bloggers I've connected with who have had every experience I have had and then some. I write to people who tell me I believe you. I write to myself, for myself, on this blog, hoping that writing will come through for me again. Will help me see and think.

And I cry. Little bits at a time because letting it all out at once will only make it hard for me to breathe.

It doesn't seem to matter whether the appointment goes well or poorly. Whether I like the doctor or not. Whether I'm believed or written off as a psychological case. Whether we find something to do or try or not. Regardless, I walk out with post-appointment depression.

I walk in smiling and I leave in tears.

I'm not writing this because I want people to feel sorry for me. I'm writing this so people will understand. So that, if a person ever finds herself in a place like this, she won't wonder if she's normal for feeling this way. I'm writing this because otherwise it just stays inside of me. And because I believe that the sad parts of ourselves deserve their due attention. They deserve to be cradled and cared for. Acknowledged.

And just maybe, if I write about this, it will start to reshape itself and light will stream in and shine on all the dark spots, and the light will magnify and spread and color will return and then, just maybe, probably, almost certainly, I'll be able to walk in to the next appointment smiling once again.


November 9, 2016

Reflection

It's November. November 2016. The air outside is chilly. The trees are half bare, their vibrantly colored leaves scattered on the ground, curling at the edges as their remaining moisture seeps into the air. My first friend-in-motherhood has been dead for a year now, her tragic death still feeling as fresh to my heart as the day it happened. And the anniversary of my getting sick has come back around.

This month we mark five years of undiagnosed illness. Five years of unexplained, untreated pain and ailments. Five years.

It is safe to say there is a lot of reflection happening here.

I remember arriving at the testing facility for my first MRI in 2012. I'd driven there alone, not knowing what to expect. My palms were sweating as I signed in at the desk. I was afraid. Afraid of what the MRI would show. Was there a tumor growing in my brain, pressing on a cranial nerve in my ear? Was this MS? Was it nothing? The receptionist asked me some questions, one of which was how long I'd been experiencing my symptoms. I told her and her eyebrows raised as she did the math. She said something like, "Two hundred twenty days...that's a long time to feel sick!"

I nodded that I agreed, thankful for her compassion because after seven months and numerous doctor appointments I'd already caught on to how uncaring medical professionals could be in circumstances like these.

Two hundred twenty days. That felt like a lifetime, at the time...

Back then, whenever I had a good day, I'd say, maybe it's gone forever. It felt like it could be true but I believed it a little less every time the symptoms returned, until the naivety was worn away. Even then, though, I could not accept that this was how my life would be.

I remember telling my mom that if I knew this was never going to go away, it would be easier to accept. That the not knowing was what made it so hard. The constant wondering if it was gone, if it was coming back, if it was treatable, if it was curable...so many questions and unknowns, that was what made my head swim in endless circles. She suggested I just act like I knew it was permanent so I could move on. But I continued to wonder and freak out and obsess and lament.

I pointed out the arrival of the five year mark to Mr. Amazing while I thought about the way we used to plan for when this was over. Remember that time you were sick for (however long), we planned to say. And we planned to laugh about it because the whole thing would be a distant memory.

"That's one third of our marriage," Mr. Amazing said.

My heart skipped a beat in my chest. I felt my eyes trying to well up. I swallowed it down. I wasn't processing information well, so attempting to do math was out. "Will it always be one third of our marriage?" I asked.

"No. It won't," he said. "In another 5 years, it will be half our marriage. And after that it will always be a majority of our lives together."

My heart skipped another beat. "That is so sad," I said, with dry eyes, as if we were talking about this happening to someone else, someone we barely know; not like it was about me, about us.

We sat, momentarily, in silence.

"These are not pleasant statistics," I said.

"This is reality," he said.

This is Reality.

I've come a long way since those first few years. I understand now that I will never have my old life back. That this is chronic. That all the denial and bargaining in the world won't change this fact. This illness is a permanent fixture in my life. I've had to change my plans and learn to do things differently and accept certain defeats. I will continue to have all of the stages of grief cycling through my emotions, because the process of grief becomes chronic too. It's continuous, just like the illness. There are infinite losses and perpetual grief and these things are difficult to work through. Sometimes it all feels too heavy and I fall apart. But sometimes I'm able to see a strength inside myself that I never knew I had. And I can also finally say I have reached a place of acceptance. 

At least, for the time being.