Wednesday, June 16, 2010

My Weirdness Only Gets Weirder ...

My family and I spent a big chunk of last night in the emergency room, finally getting home at 5 a.m., about an hour before the alarm clock went off. Luckily, Ellie settled in better than Scott anticipated and they slept about five hours before getting up and going to work and school. 

I'm trying to figure out where it all started. In hindsight, I think I was having muscle spasms in my low back all day yesterday. But I was tossing and turning last night, having trouble getting to sleep. I decided that it was my costochondritis that was the primary cause of the problem and decided to take a pain pill. It was about 2 a.m.

I went back to bed but the pain was getting even more intense. I started to feel like there was something super tight wrapping around my torso from my arm pits down to just below my rib cage. I moved around trying to find a comfortable position, but just got worse. I thought maybe I needed to be propped up in bed, and moved the pillows around until I was mostly sitting up. 

The pain started to make it difficult to breathe. I found myself gasping, and moaning with pain with every exhale. I felt hot and my mouth was dry, so I tried to go into the bathroom to get some water. Moving across the bedroom was just excruciating, and I couldn't manage to get a cup of water. I tried lying on the bathroom floor, which has nice cool tiles, but lying flat just made everything hurt worse. 

I managed to get out of the bathroom and bedroom, onto the landing at the top of the stairs. Scott had earlier responded to a call from Ellie and had dozed off in her room. So I was lying on the carpeting, writhing with pain, making noises I'd never heard myself make before, and trying to call for Scott loudly enough for him to hear me but not to wake Ellie, who I didn't want to see me in so much pain. 

I don't know how I got downstairs, but I knew I wanted to be in a recliner. I asked Scott to call my internist's practice and request the on-call doctor. Neither of us was really thinking clearly, so of course he said he couldn't diagnose me over the phone and we should call 911 and/or go directly to the hospital. 

Scott asked if he should go wake up Ellie, but I really didn't want her to hear/see me like that so I suggested he call our neighbors and see if her beloved "Auntie" Joan could come take care of her while we went to the hospital. 

She came and helped us get organized enough to find a list of all the meds I take. And she was awesome about holding my hand and talking to me to distract me. That's always a huge help when I'm in super bad pain. Unfortunately she's had some practice doing monologues to distract people from pain. :-/

We called 911, with Joan's encouragement because she was afraid I'd end up having a heart attack in the car with Scott driving. The firefighter/medics came in and set up shop. It was a little intimidating and overwhelming to have them here, but they were able to do an EKG and determine that my heart was not doing bad things other than its usual tachycardia. 

Meanwhile, Ellie woke up and when Joan tried to comfort her and keep her upstairs, it wasn't working. She wanted to see that I was ok and didn't want to be at home if Scott and I were leaving. So the three of us headed out for the hospital about 3:20 a.m.

Luckily, it was a slow night at the ER, so I got triaged immediately and taken into a room, where they did a repeat of the EKG to confirm that no, I wasn't having a heart attack. 

The doctor discussed a variety of possibilities, including that I had a pulmonary embolism. But somewhere in this journey, I think when the paramedics got there, the pain meds kicked in, which brought my pain levels down to "normal" high levels. At the worst of it, the pain I was having was way beyond anything I'd ever experienced or even imagined. 

I liked this doc, who apparently learned something along the same lines as Doctor D, who has blogged about the fact that all the cool new technology that can help us figure out what's wrong with us can also hurt us by exposing us to radiation, etc. The ER doc I saw was willing to do the tests to be absolutely sure that I didn't have a pulmonary embolism, but that would have required IV stuff my body doesn't like and significant amounts of radiation. And since neither of us really thought that was the cause of my problem.

So, he did a chest x-ray just to be 100 percent sure my heart wasn't oversize or anything. Truthfully, I don't think I needed that either. But he kept talking about "standard of care" and "this is what we do when people present with your symptoms." 

After the normal x-ray, he sent me home and told me to follow up with my internist. Oh, he also had me drink something that had some numbing drug to it to see if my problem was esophageal spasms. Didn't affect my pain one way or the other. Also gave me 1mg of Ativan despite my reluctance to add it to my drug cocktail. It's definitely a happy, relaxing pill.

Unfortunately, my internist is totally booked until June 25. (And I'm probably lucky to be getting in at all because she's taking almost the entire month of July off and all her regular patients are trying to squeeze in.) In the meantime, I plan to take my pain meds as needed, and take Flexeril, the muscle relaxant I'm allowed to take up to three times a day, at its maximum dosing.

Possible causes of the weird event:
  • Side effect of Adderall, which can cause panic attacks
  • A severe esophageal spasm
  • Muscle spasms that wrapped around my torso (which is my theory since I can detect some of the spasms I'm having, such as the muscle on the left side of my neck is spasming right now.) I just have no idea at all what would have caused it.
It's just been that kind of week, I guess. On Sunday evening, I noticed a weird spot on my foot that hadn't been there that afternoon, when I clearly recalled looking at my feet. I have no memory of getting anything dropped on my foot, and the spot didn't look like a normal bruise anyway, it was mostly red with some dark reddish purple. Not tender to the touch. I showed it to Scott, who's always very laid back about things, and he looked perplexed and told me to show it to a doctor if it didn't look less weird on Monday. (Hmm... should have showed it to the ER doc, but I feared he already thought I was looking too hard for attention.)

Anyway, here's a not-very-good photo of it from Sunday night:

Yeah, it looked more weird in person than it showed up in the photo. By Monday a.m., it had changed colors and, while it still doesn't look like a normal bruise to me --- it's kind of faded to a brownish gray -- it's not as freaky as I found it Sunday night. 

Saturday, June 5, 2010

Unhappy Anniversary

On June 4, 2007, I went to bed feeling a little rundown but otherwise fine. I'd gotten everything packed for our trip to Chicago, leaving the next day. 

At some point in the wee hours, I woke up freezing cold and couldn't stop shivering. I stumbled to the bathroom, barely able to be upright, then went back to bed, huddled under as big a pile of blankets and quilt as I could manage. That lasted a few hours, and then, just as suddenly, I was drenched with sweat and my pajamas and sheets were soaked. By the time the alarm went off, I discovered I literally couldn't sit up in bed much less navigate an airport with a toddler. My head hurt so bad it felt like it was going to explode. 

We canceled the trip. I wasn't able to get out of bed for at least 12 hours, and while I probably should have gone to the ER that morning, or later that afternoon, I told Scott I was too sick to go anywhere. I finally made it to the doctor three days later, on June 8, and was diagnosed with bilateral pneumonia.

And that, essentially, was the start of my chronic illness. The pneumonia eventually cleared up, but I never got better. The extreme fatigue that kicked in in June 2007 has never improved. I've developed new symptoms along the way, but I still remain as much a medical mystery as I was when I started this blog in October 2007. 

When I got sick, it was just supposed to be a temporary thing. I even managed to keep Ellie at home with me for the first month, although she spent the whole time watching TV while I lay on the couch, getting up only when she needed a diaper changed or food. I was completely dysfunctional. Then I got admitted to the hospital in July 2007, and we realized that I was in no condition to take care of Ellie, so we enrolled her in KinderCare for what we were sure was a six-week-maximum period to allow me to recover. Three years later, she's still in full-time daycare (albeit a much better program that's more preschool than daycare), something we never would have believed back when it all started. 

People tell me all the time, "You look great! You must be feeling much better!" And I just smile and don't say anything because, really, the vast majority of people who say that mean well. They want me to be better. (Not as much as I want to be better, but still, they really do want it.) 

Thanks to those of you who have been offering me support right from the beginning, and to those of you who share your own experiences with me, and to those who haven't found my blog yet but will at some point. I hope I can offer even half as much support to others as I've received through this blog. 

Thank you.  

Thursday, June 3, 2010

Chronic Illness & Travel

I've been meaning to post about good intentions gone awry, but I'll get to that later. 

When I saw the call go out for submissions to the Patients For A Moment blog carnival on the topic of travel, I knew it was something I wanted to write about. But since I feel like I'm chest deep in quick sand and not getting much of anything accomplished, I missed the deadline. You can check out the blog carnival over at the Oh My Aches and Pains blog. (There's some amazingly good posts included. Please go take a look!)

But I thought I'd still take a stab at it even if I didn't make it into PFAM.

Travel has played a huge role in my mystery illness. From the start of my illness, which kicked in literally overnight before the day I was supposed to fly to Chicago for my niece's 2007 high school graduation.

Then, a month later, we made our usual trip to visit my husband's parents over the Fourth of July weekend, which coincidentally is Scott's birthday. I rationalized that it was no big deal -- I mean, what's the difference between lying on someone else's couch than lying on mine. Boy was I wrong about that! I came home sicker than I left, and ended up getting admitted to the hospital from the emergency room a few days later. (Spent 8 days having a vast variety of tests done before they decided that whatever I had, it wasn't going to kill me anytime soon and sent me home in way worse condition than they admitted me.)

With my immediate family 1800 miles away in Chicago, and Scott's parents 250 miles away (which takes about the same amount to drive as it does to fly to Chicago -- which I always find somewhat ironic) and Scott's extended family in Iowa, there's a lot of guilt about not getting Ellie to visit family. 

We really wanted Ellie to visit Disneyland while she was young enough to be princess obsessed and believe in magic. The original plan had been to take her as soon as she was potty trained. But we kept waiting for me to feel better.

Earlier this spring, we realized that this was our last chance to be able to take her to Disneyland during an off-season time to avoid the crowds. It's no big deal to miss a few days of preschool, but there's pressure not to pull kids out of school, even kindergarten. 

I really wanted Ellie to have that Disneyland experience. But after that 2007 trip that landed me in the hospital, I was really scared of even trying it. And yet, when I thought about sending Scott and Ellie alone, it made me really sad to think I was going to miss out completely on watching her experience the magic of Disney. 

Finally, I convinced myself (with encouragement from Scott) to go ahead and try it. We decided to stay on the resort (the Grand Californian is amazing!), and figured I'd do what I could and nap in the room the rest of the time. I looked into buying a shorter length park hopper ticket for myself since we were staying five nights, but it turned out that once you buy a three-day ticket, it's not much more to buy a six-day ticket. So I did, and with a lot of anxiety on my part, we went to Disneyland April 22-27. 

I spent a lot of time napping in our room. I essentially managed to meet them for a meal a day and a little bit of the parks. I discovered that 90 minutes was a hard limit for me, and I'd need major downtime. And even for those 90 minutes, I was pretty much a zombie. I had to tell Scott to keep as close an eye on me as he did on Ellie because I was so exhausted I had little to no memory. 

I lost our camera on our first visit to California Adventure, the night we arrived and had reservations at Ariel's Grotto. After dinner, I'd taken a photo of Scott and Ellie and then needed sit on a bench for a while for a breather. When we started back to the hotel, Scott wanted to take a photo of a water wheel. I said, "Fine. I'm just going to sit down again." But it turned out I hadn't given the camera back to him and, best we can figure, had left it on the bench by Ariel's Grotto where I'd sat down. He went running back there, but it was already gone. We got directed to the lost and found but weren't really feeling too optimistic. Ellie and I went back to the hotel, which was closer than the lost and found, and Scott went off in hopes of retrieving our camera. He got sent to a couple different places, but at the main lost & found for the both parks, he got lucky. He told the castmember working there, "I believe in magic!" and sure enough, she pulled out our camera. It helped that he could say that the last photo taken as of him and his daughter since most of the other photos were of Ellie alone or with a character. 

It wasn't the kind of Disneyland trip Scott and I used to take back in our pre-Ellie days. (Although even in those days, I liked to go back to the hotel for the heat of the afternoon and nap!) And I think I have to credit Elizabeth McClung over at Screw Bronze, who inspired me to to be a part of making memories with Ellie. She's all about pushing the limits of her illness, and it's amazing what she's been able to do. 

Even though I look at the bulk of the photos Scott took and wonder, "Where was I when they were doing that?", I'm happy I was there to see as much as I could manage, which was more than I expected but less than I wanted. (Talk about a run-on sentence. Sorry about that. I'm tired and my brain is already faded.)

I'm glad I went along to Disneyland with my family. But even still, there's a part of me that wonders, since I'm still paying for it physically over a month later, was it really worth this much pain and fatigue? 

Then I look at the photos, and yeah, I'm glad I went. Even if I wasn't there for all the wonder and magic, it was better to be there for some of it than miss all of it.

Wednesday, June 2, 2010

Drug Warnings

Since I got sick three years ago, I've had a lot of prescriptions for various medications that can be abused by others. 

But I recently started a trial of Adderall, intended to combat my fatigue and perhaps help me concentrate better. I was taken aback when I discovered that the generic name for Adderall, according to my pharmacy's labeling, is simply "amphetamine mixture."  Somehow, that made me think more of meth addicts than people with attention deficit disorder, its most common use. 

Adding to that, when I read the little handout from the pharmacy about what to expect from taking it there was more detail on protecting my medicine from friends and family who might try to steal it than on potential side effects. (Can I just say that I'm so hoping to be among the 11 percent of people taking it who lose weight? That's a side effect I'd love to have! :-)

Seriously, the handout from the pharmacy warned me to keep a constant check on how many pills I've taken and how many are left in the bottle because they're apparently frequently pilfered. (Or maybe people just claim they are?)

It really just kind of blew me away because I've never gotten that kind of warning on a bottle of narcotics, which I thought were more commonly abused than any other pills. 

So, the good news is the Adderall really does help me do a bit more and feel a bit less like a zombie for a few hours. I'm on a minimal dosage for the trial, and will visit my doctor next week to discuss whether some symptoms I'm having that seem worse in the past week (intense headaches, stomach and intestinal issues) are possible being exacerbated by the Adderall.

But even before I started taking the Adderall, I noticed that my sleep needs and fatigues had greatly increased. A couple months ago, Scott observed that I was coming downstairs later on weekend mornings than I previously had. And he's right. I used to try to come downstairs on weekends by 10 a.m., and then just go take a nap after lunch. These days, I'm lucky if I make it downstairs before they have lunch. On weekdays, I'm having trouble getting up for 1 p.m. doctor appointments, which used to be my prime time. It is what it is, I guess, but it's not like sleeping later is leaving me feeling more energy in late afternoon/evening when my family is home. It's just that the window of feeling less zombie-like seems to have shrunk.