Tuesday, September 10, 2013

What My Chronic Illness Feels Like

Hey, remember me? I used to post more often, but lately I feel like I don't have anything new to say that I haven't already said so my blog has languished. (See apathy below) But Duncan sent out a topic for the September edition of Patients For A Moment that inspired me to get back to this blog. In the sense that imitation is a form of flattery, I've used a similar format to Duncan's post. 

Even people who share a diagnosis experience their chronic illness differently. And while I continue to collect secondary diagnoses, my primary diagnosis remains unknown. Or maybe I don't have a primary diagnosis -- who knows?

But here's how I feel. For today, at least.

Chronic Fatigue: I've written a lot about my intense fatigue over the years. My most popular post explained the difference between clinical fatigue and being tired. But what does it feel like? It feels like walking through the ocean, water above my head, fighting the undertow. Even the little things, like taking a shower or dressing myself, can be more than I can do when I flare. Even on good days, I so miss the days when taking a shower was energizing instead of enervating.

Joint Pain: I hurt. Every. Single. Day. Sometimes more, sometimes less. Over the years, I've learned to live with it and push it into the background most of the time. I use pain meds as rarely as possible because I'm always worried that the pain will get worse than it is and then I'll really need them. But I also know that out-of-control pain can spiral up rapidly and it's better to be ahead of it than desperately trying to catch  up and get it under control.

GI Issues: My GI stuff comes and goes, but has been sticking around for the past year or so without relief. It's primarily lower left quadrant pain, and ranges from a dull ache that I can ignore fairly well during the day thanks to distraction to feeling like I've been stabbed with a really big blade. Sometimes I feel like my belly is going to explode, and that exploding would be a huge relief. And the frequency and length of my bathroom visits have increased too, but I'm not all that comfortable discussing that publicly.

Tachycardia: My resting, horizontal, quiet heart rate hovers around 100 beats per minute, and I'm generally around 120bpm when I'm upright. Add conversation, and my heart rate goes up another 30bpm. Add movement, and it goes even higher. I usually don't feel like my heart is pounding, but sometimes I'm aware of it. I wonder how much my heart rate contributes to my fatigue, but my cardiologist strongly believes that my heart issues are secondary to whatever is causing my health issues.

Malaise: Malaise is the general sense of not feeling good all over that you get along with the flu or most other illnesses. It's feeling weak and yucky and sick, lethargic and like you've been knocked on your butt. For me, it goes hand-in-hand with my clinical fatigue, and the worse the fatigue is, the worse my malaise is. Both ebb and flow, but are present every day for me.

Arrhythmia: Ever feel your heart skip a beat? It happens to everyone, and most of the time it's no big deal. Sometimes it can be very dangerous, but I'm lucky enough not to have that type. But when I'm having them four or more times a minute, it gets painful. And it's tiring too, although I'm not sure I understand why, but my fatigue levels go up pretty high when my arrhythmia is acting up.

Frustration:  I got sick in June 2007, and have mystified doctors ever since and I'm oh, so tired of this! I'm frustrated by all the things I can't do, frustrated by the penalty I pay when I stretch my limits, frustrated when I have to tell Ellie, yet again, that I don't feel well, frustrated when a new symptom develops, frustrated every time a test result is inconclusive.

Fear: I live in fear of pushing too hard and causing a flare that leaves me fully housebound again and unable to do even the small, quiet activities that I do these days. Sometimes it paralyzes me and keeps me from trying to push those boundaries and sometimes it doesn't.

Calm:  I've been sick long enough now that I'm mostly out of crisis mode about my health. I still worry (see fear above), but I know that none of my current symptoms are likely to be life-threatening. There's pain and fatigue, but I know I can survive those, even when the levels get scary high.

Resentment: I resent when I'm forced to waste my limited energy on things like dealing with insurance companies and getting them to pay the way they should. Dealing with health insurance snafoos is annoying for everyone, but when you only have a couple hours a day when you feel well enough to get things done, it sucks to waste it on things like that.

Apathy: I'm down to a single doc (my gastroenterologist) who knew me before my mystery illness took over my life. And with my primary care doc's departure early this year, I no longer have anyone actively trying to figure out what's wrong with me. I find myself not really caring anymore, and not wanting to spend the energy on trying to figure it out or even just starting new relationships with new doctors. Better to save those spoons to spend on my family.

Depression: My moods are pretty stable these days (right, sweetie? :) but when I first realized, a few months after getting sick, that my life wasn't going back to normal anytime soon, I (quite understandably, imho) got depressed. For awhile there, I cried on and off at the drop of a hat. Luckily (er, sort of), I'd had post-partum depression just a couple years earlier and knew which anti-depressant I tolerated and responded to. I'm grateful that I didn't have to do the trial and error with various anti-depressants while I was so sick. And on high doses of Prednisone!

Gratitude: I'm lucky to have a supportive spouse, who does his best to pick up whatever slack he can and doesn't get mad at me for my health problems. There's a reason that traditional marriage vows mention that "in sickness and in health" part -- it is hard on a marriage when a spouse gets sick. Chronic illness is life-changing for both partners, even if one is still healthy, and often leads to divorce. I'm grateful that we're not on that path. Don't get me wrong -- I'm not grateful for my chronic illness, just for having an incredible husband.

Tuesday, April 23, 2013

A Matter of Perspective

The Best I Ever Had
Image by Thomas Hawke via Flickr

For the first time ever, I accompanied Scott & Ellie to an out-of-town skate meet last weekend. It was held in Auburn, roughly a three-hour drive from Portland.

I didn't decide that I was going until the night before. And even then, I was really torn about whether it was a good idea for my health.

Sometimes I feel like I walk a tightrope between desperately wanting to avoid a flare or major setback and wanting to participate in my family's (and especially my daughter's) life as much as possible no matter the cost.

So we left home at 7 a.m. on Friday but made a detour to stop past Scott's office and pick something up that ended up adding an hour to our journey thanks to morning rush hour.

And here's how my schedule went for the weekend, as best I remember:

11:30a-1p: Arrive Auburn, brief stop at skate rink then lunch and checking into our room.
1-6p: Nap while Scott & Ellie went to practice at the rink.
7p: Picked up at hotel to go to dinner with a bunch of skaters.
9p: Bed.

7a: Scott and Ellie head to the rink. I said goodbye and went back to sleep until around 11a.
Noon: Scott & Ellie come back and have a short swim in the hotel pool.
1p: Lunch
2p: We take Ellie to the hotel where the girls are doing hair and makeup for the junior precision team's event Saturday night
3:30p: Back to our hotel because I'm exhausted and the noise/activity level at the other hotel's lobby with 14 girls and at least one parent apiece is exhausting to be around.
4-5p: Nap
5:15: Doors open at the rink and we're right there.
5:30: Opening Ceremonies for the meet (despite competition having started at 6a).
6p: Junior precision teams (ours and another club's) skate. Then we watch the Tiny Tots skate while waiting for the award ceremony. Our girls win first place!
8p: Dinner. Finally!
9:30p: Bed

4:30a: Alarm goes off and I get up to do Ellie's hair and makeup for her 6a figures event. Scott also has two figures events starting at 6a.
5:15a: Free (and quick!) breakfast in the hotel lobby. Rink opens at 5:30a and skaters need to hurry.
5:30a: Scott and Ellie leave for the rink. I head back to bed.
10a: Scott calls and asks if I want to be picked up to be there for Ellie's dance event at 10:45a. I regretfully decline and go back to sleep for another hour.
11a: I get up, get dressed and start packing up all our gear because checkout is at noon. I'm expecting Scott and Ellie back any moment. But they aren't, so I go ahead and check out at noon and wait in the lobby to be picked up with our gear.
1p: Scott picks me up in a grumpy mood because they still hadn't posted results from Ellie's event or had the award ceremony due to computer issues and he's afraid he'll miss it.
1:30p: There's an award ceremony but we don't hear them call Ellie's event. All of a sudden everyone's asking where she is and it turns out she won second place. I chase her down and hurry her onto the rink to get her medal.
1:40p: Lunch!
3-5:30p: Hanging around rink until Scott's dance event at 5:30. Most of the younger girls are melting down because they've been at the rink since 6a and are exhausted.
6p: Ellie and I decide to eat rink food for dinner. Scott can't because he's still in his dance tux and can't risk mess while waiting for the award ceremony. He's won second place!
7p: Hit the road for home, with a quick stop at a McDonald's so Scott can eat something.
10:30p: Home at last!

Do you get as tired as I do just from reading that? And keep in mind that I slept through the bulk of the weekend!

On Sunday, I came to the conclusion that my presence at the skate meet was pointless and actually an annoyance because of the extra trips between hotel and rink that Scott had to make in order to accommodate my needs. And I'd missed three of the five events my family skated, as well as sometimes pulled them away from what they would have chosen to be doing if I weren't there. So what was the point?

Scott, however, came to the opposite conclusion. Without my having told him how I was feeling about the trip, he thanked me for coming along and said it was really good to have me there.

Clearly, it's a matter of perspective. And that's giving me some food for thought.

Thursday, April 11, 2013

Book Review: In The Kingdom of the Sick by Laurie Edwards

I got a lot of comments when I carried around Laurie Edward's new book, In the Kingdom of the Sick: A Social History of Chronic Illness In America to my various medical appointments earlier this month. Interesting comments.

"So does that book explain why there are so many people with psychosomatic illnesses these days?" my dentist asked. "There didn't used to be so many people who complain about being tired and having aches and pains all the time, people who say they can't work or lead normal lives."

And there were other, similar, comments from other people who ought to know better too. (There were also questions and comments from open minded people too. But there were more of the former than I would have anticipated considering the places I was reading the book.)


Laurie, a longtime blogger in the chronic illness community at A Chronic Dose, did a lot of research for this book, as evidenced by the ten pages of (single-spaced, small print!) bibliography as well as the informationally dense text. The book has a slightly academic feel to it, especially in the early chapters. But it was so fascinating at the same time that I was never tempted to abandon it. I did have to read it in chunks because it gave me too much to think about and want to respond to. My copy has a thick, pink fringe to it from dozens of Post-It flags I littered the pages with every time I came across something that made me say, "Huh!" or "Wow!" or "Grrrr". (The last was in the many cases reading about historical and current treatment of female patients as unreliable sources of information about symptoms. In fact, I wrote an entire blog post venting about it that I need to re-read and consider actually posting next week. It was pretty much a rant though, so I'm not sure how relevant it is to my readers.)

As in her first book, Life Disrupted!, Laurie interspersed In the Kingdom of the Sick with stories from real people living with chronic illness or treating it, which helps keep the book more accessible to the average reader. I also really appreciate the way she shares bits of her own experiences.

Below are my somewhat random musings. I swear, I think I could write a book length review/reaction to Laurie's book, but I'll try not to. The summary is this is well written, fascinating book and should be a must-read for anyone who has a chronic illness or has a close friend or family member who does. (And that, essentially, is pretty much everyone, whether they know it or not.)

**** The title comes from one of my favorite chronic illness quotations from Susan Sontag: "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdome of the well and the kingdom of the sick. Although we prefer to only use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

**** "We do not like being reminded that there are still limits to modern medicine, and that named conditions exist that may not kill us but will not go away. But if we add to this scenario those illnesses that we can't name, ... conditions we can't put under our high-ower microscopes or see on advanced imaging tests, then the fear -- and often distaste -- grows. Perhaps if the symptoms can be explained away by claiming the patient is just lazy, or is not making appropriate lifestayle changes, then blame can replace the other niggling emotion: Maybe if it can happen to him or her, it could happen to me." -- page 11

I think the above quote from Laurie's book was behind my dentist's comments. Although she very carefully said she wasn't referring to people like me with "legitimate" health problems, she was critical of her sister's claims to health problems. She believed that if her sister would just eat healthier foods, exercise, stop feeling sorry for herself and be less lazy, the sister would be fine.

While I know there are undoubtedly some people out there scamming for disability payments as depicted on the Showtime series Shameless, I have yet to meet anyone (online or IRL) who wouldn't greatly prefer to be healthy and able to work or take care of their children.

**** I love reading historical fiction, but I never knew until reading Laurie's book (p.17) that the practice of blood-letting stemmed from the belief that since women menstruated monthly and (in ancient Greece & Rome) apparently had fewer illnesses that it was a good way to rid the body of disease. Fascinating.

**** Laurie writes (p.22) that chronic illness didn't become prominent to society until after the advent of vaccines during the first half of the 20th century. Until then, enough people died or were incapacitated by infectious diseases such as polio, measles and smallpox that there wasn't much awareness of those illnesses that don't kill. Fascinating factoid: self-reported illnesses rose by 150 percent from 1930 to 1980, which was, Laurie wrote, "a clear indication that a population that lived longer wasn't necessarily feeling better."

**** Laurie interviewed a large number of patients, and even when their illnesses and symptoms were far, far different than my own, I still felt like our shared experiences in coping with chronic illness were far more similar than different. And that's an important thing to realize as health care in the U.S. continues to change. Laurie writes about how initially HIV/AIDS patients used to make a point of differentiating between the people who caught it due to their own choices and those who didn't, but once those two groups united to lobby hard for more attention and research, huge strides were made and HIV is (generally) no longer the death sentence that it used to be. I wonder what would happen if the chronic illness community worked together to lobby for our entire group instead of splintering off by diagnosis.

**** I finally learned the back story for e-Patient Dave! I've been following him on Twitter for years and seeing him mentioned in all kinds of forums in the chronic illness online community but I never knew how he became famous (at least in those circles). Turns out, he was diagnosed in 2007 with late-stage kidney cancer, a diagnosis that carries a median survival rate of just 24 weeks. He used the Internet to do research and connect with other patients, and brought his doctor reams of research. They came up with a plan, he participated in a clinical trial and overcame virtually insurmountable odds to survive. (He has also written a book, which I plan to check out: Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn From It).

**** It's somewhat disconcerting to be reading along and suddenly find your own name. :) Laurie interviewed me for her book, and I was pretty sure I didn't end up on the virtual editing room floor, but I never knew when or where my name would pop up. I feared I had rambled nonsensically in answering her questions via email, but she treated me generously and didn't let me look like a fool. Thanks!

**** Reading the chapter titled A Slight Hysterical Tendancy made me angry. And also triggered memories of times that I hadn't even realized how patronizing my doctors were being. And those date back to well before my current health issues. But that's a rant post for another day. In fact, it's already mostly written.

**** I've long been a fan of Duncan Cross, and reading his quotes in Laurie's books just confirmed my opinion of him. He's probably responsible for the largest percentage of my little pink Post-It flags. One of my favorites, which harkens back again to my dentist's disturbing comments about her sister and others: "There is a sizeable minority in this country which believes either explicitly or subconsciously that people deserve what they get. If you're sick, it must be because you did something awful or are an awful person .... Obviously, relatively few people who have chronic illnesses did anything to create those diseases, and even those who did don't deserve the suffering that results."

 **** I was essentially cheering aloud when I read about people who dislike the pressure to keep one's chin up all the time and exude positiveness. I know I've blogged about my resentment of that pressure, but I can't seem to dig it out of the archives right now. Laurie quoted someone who called it the "tyranny of cheerfulness." Another interviewee talked about how people imagine that there's a finish line that people with cancer can cross to win the race and become survivors, thereby "perpetuat[ing]  the stereotype of the valiant, effervescent cancer survivor." (p.101) What does that then say about those who "lose the battle" or face recurrences?

Laurie then writes, "The issues apply to chronic illness in powerful ways. For one, there is obviously no finish line, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so. Without that finish line that denotes survivorship, there is not the same level of cultural awareness of our diseases, no backdrop of success with which outsiders can judge our journey. Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are."


**** As I mentioned earlier, I love historical novels. So I was fascinated when Laurie drew a line connecting chronic fatigue syndrome and fibromyalgia to other mysterious illnesses that have occurred throughout history with little or no understanding. And usually written off as some sort of somatic illness, so I guess some things rarely change. :P

Ok, if I keep going on, you might think you don't need to read this book because I've told you everything. Trust me, you do need to read it. In fact, I think reading it several times is beneficial because you can't possibly absorb all the information with just one read of it.

Full Disclosure: I received an advance copy of the book as an interviewee. I received no compensation, either for sharing my story/opinions with Laurie or for doing this book review. My opinions are my own, although I think anyone with any sense at all would agree with me that this is an excellent  book. :-)

Sunday, March 10, 2013

People Say The Darndest Things

It's not just kids who say the darndest things. It seems like everyone does, especially when it comes to people with chronic illnesses. Including those who should know better.

I have a friend I've known for almost 30 years (eek, that really dates me!) who has Crohn's disease, an autoimmune disease that attacks the gastrointestinal system. In the past year, the friend has developed an autoimmune form of alopecia and has lost all his hair. Everywhere. Including eyebrows, eye lashes, legs, arms, etc.

I'm mortified to admit that I made a (bad) joke about wishing for just a teensy bit of that for Scott, whom I'd recently been teasing about how the only gray hair he has is the stuff growing out his ears. My friend somberly responded, "Don't wish it on him. I wouldn't wish it on anyone."

You'd think, after dealing with thoughtless things people say to me for the six years since I became chronically ill, that I'd know better. And I do. But that doesn't always keep me from opening my mouth and inserting my foot. I try to keep that in mind when people say things to me that put my teeth on edge.

This month's Patients For a Moment blog carnival is all about those things people say that they should know better than to say. Hosted by Leslie over at Getting Closer to Myself and going live on March 15, she wrote a post about it called Shit Tactless Idiots Say To Sick People. Leslie has a way with words. :)

I'm pretty sure medical professionals think they're empathizing when they say things to me like, "You're too young to be this sick!" or "Wow, I've never seen such a thick file on someone under 75 years old!" (Hey, that last one will be going away soon as all the doctor's offices are transitioning to electronic medical files! But I'm sure there will be another equivalent -- maybe about gigabytes of data in an electronic file.)

I have a friend who telecommutes from coffee shops all over Portland for her job, which is based on the East Coast. She keeps telling me to come meet her for lunch or coffee, which would be appealing, but parking is so limited in the areas she favors. "Oh," she says, "I never have trouble finding parking. I just park up above 20th and walk down to 13th or below." Which is great for her, but not so great for me. I might make it down to the coffee shop, but considering that socializing by itself exhausts me, I fear I wouldn't be able to make it back to my car afterward. I've explained this to the friend multiple times, and I don't know if she just doesn't get it or doesn't want to get it. These days, when she says it, I just respond, "Yeah, that doesn't work for me. I wish it did."

Most things people say to me are the same things all my chronically ill friends get tired of hearing:

  • "But you don't look sick!"
  • "You look great! You must be feeling better!"
  • "You need to get some exercise. That will give you more energy and make you feel better!"
  • "Oh, my grandmother has joint pain in her hands/wrists too!"
  • "Stop sleeping so much and you won't be so tired!"
  • "Oh, I had the same problem(s) but I started taking xxxxx supplement/herbal remedy/etc and now I feel great! You should try it!" 
And so on and so forth. 

Most people say these kinds of things either with the best of intentions or simply without thinking about it. 

Like Leslie, I do wonder about the medical professionals who complain about things like how hard it is to get blood for me or the "extra" work my being medically complicated causes them. After all, they wouldn't have jobs without patients. And more importantly, it's not like I'm choosing to be difficult or complicated. I'd definitely prefer to be healthy!

What kind of tactless or stupid things do people say to you?

If you're looking for thoughtful things to say to chronically ill people, here are some links to good suggestions:

Thursday, February 14, 2013

Oops! I Did It Again!* aka Over-Scheduling For A Sick Momma

I guess I took a sick day yesterday. Sort of.

I didn't mean to, but I guess my body knew what it needed and overruled my brain that had over scheduled me. (Actually, even my brain knew it was a bad idea.)

It's been a crazy week, and getting crazier every day.

It started on Sunday when I finally decided that I couldn't keep sending my kid to school in boots that were falling apart. And she's been insisting she wants jeans, after years of telling me she didn't. So we hit Target looking for jeans and boots. And struck out.

So we went to Sears, where I had to return a dress I'd ordered from Lands' End that didn't fit, and looked there. We found the boots, but again struck out on jeans, and called it a day. An exhausting day.

We also discovered we had lice. Again. (Have I mentioned recently how awesome it is to have a school-age child?) So that meant that my stay-at-home, recover-from-the-weekend-and-gird-for-the-coming-week Monday was shot because we visited the fabulous ladies at Lice Knowing You in Beaverton. Thankfully, we caught it much earlier this time and the bill was far lower than last time around. It didn't help that I couldn't fall back asleep after Scott got up at his usual 5:45 a.m. because my neck itched. So it was a long, exhausting day instead of a recovery day.

On Tuesday, I had acupuncture (thank goodness!) and then had to pick my kid up from school to take her to a Hebrew tutor. The downside to leaving a Jewish day school is having to figure out how to get your kid a Jewish education when a normal three or four times a week after-school religious school doesn't fit into your schedule. Sigh. The upside is her beloved Hebrew teacher from kindergarten and first grade agreed to tutor her. And Ellie was soooooo happy to see Morah Devorah again.

So when my alarm went off on Wednesday morning for me to prepare for a visit to my immunologist, apparently my body said, "Uh, uh!" I woke up two hours later, ten minutes before my appointment at his office that's at least 20 minutes away. So I called to see if it would be possible for me to arrive 40 or so minutes late (I had to get dressed! Take meds! Eat something!), but his schedule was booked so they kindly rescheduled me for next week.

Which meant I got a jammies day at home, which was just what my body needed.

And that's good, because my week is only going to get crazier because Scott is headed north for a roller-skating competition on Friday morning and won't be back until Monday afternoon/evening. While I'm pretty used to occasional solo weekends, this will be my first solo parenting weekend. (I got my first solo parenting in last summer when Scott went to Nationals in Lincoln, Nebraska, but that had the benefit of being on weekdays when Ellie spent all day at camp.)

I feel like I'm almost faking my way as a "normal" soccer mom this week: Out of four days of school, I'll have picked her up three and taken her somewhere. And today, on her first solo school bus ride home, I was waiting out on the driveway when the bus dropped her off. In my jammies, but I was there. :-) It counts, right?

But although I've managed to keep most of my balls in the air so far, it's clear that I can't maintain this schedule for long. :-/

I'm just aiming for long enough.

Wednesday, February 6, 2013

Chronic Illness Has Its Own Language

One of the most overwhelming things when I first got sick was all the medical lingo I had to puzzle through.

I consider myself fairly well educated, and during my days as an AP reporter, I had experience translating complex jargon (whether medical, scientific or government-ese) into English that the average newspaper reader could understand.

But when my brain was fuzzy from that onset of illness and the meds treating that illness, I could barely formulate questions much less understand the answers the doctors gave me. And they threw so much at me with tests and diagnoses I'd never heard of.

Thank goodness for the Internet. It started with LabTestsOnline, and from there to the Mayo Clinic website and various other sites online. I picked up the lingo to the point that my mom and my internist started telling me I should go to med school. :)

I didn't realize quite how much I had learned the language until my first visit with a neuro-muscular neurologist. When he asked me what I understood to be the reason I'd been referred to him, one of the reasons I told him was that my internist thought he might be able to figure out why my anti-ganglioside antibodies were abnormal and whether that was to blame for some of my neuropathy issues.

The fact that I even knew the phrase "anti-ganglioside antibodies" floored him. And when I explained my understanding of what they were and what they did, he asked me if I had a medical background because, he said, he'd never had a patient before who knew those details. (I'm still kind of proud of that!)

In these days of 10-minute doctor appointments, when even good doctors have so many patients to see every day that they can't keep up with the minutia of every patient's chronic illnesses, it's absolutely crucial for patients to develop some level of medical literacy because we patients have to be advocates for ourselves.

Despite the electronic medical records that should be linking all my specialists and my internist so they can all be in the loop, I frequently find that reports haven't been sent or that crucial information was left out. I'm constantly asked to provide test results and conclusions/recommendations from one doctor to another. Without my files of lab and other test results, I would have had to repeat tests so different doctors in different  health systems could see the results for themselves. (Having a fax machine helps, too!)

I can't think of a downside to educating myself to be able to understand what's going on with my body and with my various health conditions. And I would not continue to see a doctor who didn't appreciate my efforts to do so. (Early on, I dropped a doctor who told me to stay off the internet and that he would tell me anything I needed to know. Clearly, the man was still living in the 1950s.)

And educating myself helps me feel like I'm at least a little in control of my health. I might not be able to cure myself or even avert a flare, but at least I can understand what's going on with my health and ask educated questions of my various doctors.

Thursday, January 10, 2013

New Year Means New Beginnings

It's been a rough few months for a multitude of reasons (but luckily mostly not health related).

We had some school-related drama that kept Ellie home for almost two months before we finally enrolled her in a different school. (It's early days yet, but so far, she seems much happier. And her new teacher seems to be just what she needed.)

The pneumonia lingered and lingered. When I finally made it to the immunologist last month, the pneumonia had cleared out of my lungs, but my lung function was at just 68 percent. And two nebulizer treatments in his office only brought it up a little bit.

Then, in just the past few weeks, we dealt with lice (I highly recommend Lice Knowing You in Beaverton if you're local and ever need it! It was frighteningly expensive, but worth the money to have it all dealt with at once and have confidence that it was really gone.), a broken furnace, and a mysterious crack in a car's radiator that needed to be replaced.

So although January isn't my usual time to think of new beginnings, we're definitely ready for a change in our luck and hoping the new year brings it.

There are definitely some new beginnings ahead, although in some ways it feels more like I'm recycling than any sense of renewal.

I had my last appointment with my primary care doc today. Sigh. I'm really going to miss her, even though I totally understand why she's leaving her practice.  I dread the thought of starting over with someone new, but c'est la vie.

I saw my hematologist this week. While it will take a week or two to get the results from checking my MGUS levels, the other tests already came back showing I'm anemic again. Not dangerously, and not even as badly as I was a few years ago before I got iron infusions. But likely headed toward more infusions sometime in the next year.

My immunologist wants to put me on three new medicines to replace one old medicine because my lung function, which is normally right around 100 percent, is hovering around 84 percent. Which is good in comparison to where it was a month or so ago, but still feels like I'm short of breath.

So, haven't I been here before? Experimenting with new-to-me medications, looking for the right doctor, anemic and wondering if that's responsible for my increased fatigue levels? 

I guess the more things change, the more they stay the same.

Wishing you all the best in this new year!