It Has Got To Be “The” Lupus

Lately, I find myself saying “the lupus” not “lupus”, when referring to the disease because I think it may be gaining ground…

One thing that I’ve become very bad at is going to the doctor for things when I know there is a problem. That’s pretty counterintuitive for someone who’s chronically ill, I know, but it’s the truth.

I’ve been having some pretty serious dizzy spells, for months now. At first they were only occasional, and now they’re to the point that they are happening at least once a day.

At first I thought maybe it was a blood sugar thing, then I thought maybe it was from drinking coffee that’s too strong. Then there seemed to be some vertigo going on, too, and so I thought maybe it was a problem with my ears or my head. Then there seemed to be too many of them, and not enough reasons to pin them on, and I decided I shouldn’t wait until I see my rheum in June, and should pay a visit to my PCP.

And I don’t want an easy fix. I don’t want to be prescribed anti-dizziness medication. I want to find the cause. But that’s easier said than done when there are a host of possibilities. Although my PCP agreed that another medication isn’t the answer to this problem.

The main reason I avoided going to the doctor is because I simply didn’t want to know. I was unsure if this was lupus related, and if not, what then? For once, I found myself hoping beyond hope, that the dizzy spells were from the lupus.

It makes me a bit sick to my stomach to think that I am hoping that I can blame some other bodily quirk on an incurable disease. Even though, in my head, I know there is no cure for lupus, when I hear the word incurable, it truly makes my head spin (no pun intended).

I am reminded, in some kind of genetic lottery or twist of fate, that my body is attacking itself. It is viewing everything that it should hold near and dear, as something that should be gotten rid of, eliminated. And it is doing everything it knows how to get rid of what is really supposed to be there.

You know, when I think of my illnesses this way (because arthritis is attacking everything that lupus isn’t), it exhausts me. It gets me down. It makes me feel less hopeful, and more scared. Sometimes reality is hard to swallow, especially when it decides to smack you in the face.

This experience has made me realize the faith that I have to have in my rheum, and blind faith, at that. Because all I kept thinking was, what if I don’t really have lupus? What if they were somehow wrong all along and I have something that has basically gone untreated? Because the only way that lupus makes sense is that it doesn’t make sense at all. It’s so unpredictable, and can impact so many bodily systems, that it seems like it has to be right, because what else could it be? These thoughts swirled through my head as I imagined all of the possible causes of dizziness.

My PCP called me…on a Saturday…which is never good. White count is down, kidney and liver are up. Doesn’t explain the dizzy spells, but it does point to active lupus. And in some ways, it makes me feel like an idiot. Has my lupus not been active for so many months that I forgot what it feels like? Did I think that I could take on the world and run myself ragged without it catching up to me? Did I think that just because the lupus had calmed down a bit, that it wouldn’t resurface with a vengeance? I think I let the allure of feeling good seduce me into ignoring the signs that pointed to lupus.

While my PCP was incredibly thorough, I was left with a bit of a bad taste in my mouth, with her telling me that of course I should go to the emergency room if things get worse. Ah! I don’t want my body to be so unpredictable that the ER is my main line of defense.

Anyway, there’s no magic pill.

And I realize how little I know about this disease, but how much it thinks it knows about me.

So, I guess the lupus count starts again. Leslie 0, Lupus 1.

Does Misery Really Love Company?

I attend(ed) two “in-person” support groups; one on campus through the student health clinic, which I helped start, and one off campus sponsored by the Lupus Alliance. The on-campus group is for students with any type of chronic illness, and the other is specifically for people with lupus.

One thing I’ve noticed is that at the several support groups I attended, while we often talked about serious issues, most of our time was spent laughing. This is sort of surprising to me, or I think, rather, would be surprising to healthy people, who probably think that support groups of this sort are a pity party, full of a bunch of “Debbie Downers”.

There was a time when I felt grateful for these few hours every couple of weeks, where I could be open and candid about illness and other things going on in my life. The student group has ended, and unfortunately, probably won’t continue next year. And lately, you couldn’t pay me to go to the lupus support group. I haven’t been for four or five months.

When my disease activity is low, I have a much easier time of dealing with group than when I’m in active disease mode. You would think that it would give me comfort to be around other people who know what I’m going through during those down times, but instead it just feels overwhelming, adding insult to injury. On the other hand, when I’m feeling good, I don’t really want to go and hear how bad lupus is. Because I know how bad it can be. I’ve been there, and will certainly be there again.

I think another thing that has kept me from getting more attached to the lupus group is that I am usually the youngest one there, and there are several other characteristics in which I strongly differ from the other people that attend. On the surface, these differences aren’t insurmountable, but when it comes right down to it, I feel like I have less in common with many of them than I do with other people I’ve met who have totally different illnesses than me. And that’s what was great about the student support group. Even though we had different illnesses, we were all dealing with the common experience of navigating higher education – which can be unforgiving to us chronically ill folks – while also dealing with the unpredictability of illness.

Generally, I think support groups are really useful, which makes it even more difficult to admit to myself that I am having serious issues about attending, and that as far as the lupus group is concerned; I don’t know if I’ll ever go back. Because right now, for me, my goal is getting healthy and staying that way, and if the support group doesn’t fit into that schema, I’m not going to do it.

I’d like to hear other people’s experiences with support groups. Do you generally find them helpful? Or do you find more help from more informal means?

For me, I have several friends now that I have met through various venues, who are chronically ill. I find our encounters much more helpful and therapeutic than I find traditional support groups lately.

And Truth be told, for the most part, I have been doing better lately (er, well, I say that now as I’m pretty sure I’m in active lupus mode right now…more on that in an upcoming post). But that doesn’t mean that things are easy or that lupus isn’t a part of my life, because it certainly is, everyday. It’s just that it has taken a backseat to other things, like trying to build a wonderful, solid relationship with my boyfriend, working on finishing my second preliminary examination for graduate school and starting my dissertation, working to create a non-profit organization, and working on writing a memoir.

I think this issue with in-person support groups has once again made me so thankful to have the online community of chronic illness bloggers, who have been, and continue to be, extremely helpful and supportive. It’s funny that we live in a time where “live” communication just may not be as good as the virtual world. And in some ways, that’s the nature of the beast. One of the main problems with “live” support groups for chronically ill people is that, inevitably, the group that participates is not consistent, due mainly to illness. And this is a serious impediment to building community and staying connected; which is less so the case virtually.

And I personally don’t think of the online chronic illness blogging/virtual community as a support group, per se, because it’s less formal and organized than a “traditional” support group should be, although it seems to be leaps and bounds more beneficial. In many ways, I think of the online community as so much more. It’s more than support, it’s my life line.

“65 Roses,” “Cystic Fibroris,” And Other Tongue Twisters

May is Lupus awareness month. And today is World Lupus Day. I cited an article in my last post, Time Is A Luxury We Don’t Have, about young people blogging about death. I did some research on the main person that the article was written about, and I learned a lot.

So it goes that when children who have cystic fibrosis are young, they can’t quite say “cystic fibrosis”, so they end up saying “65 roses”.

But I have to wonder. Haven’t we all had these moments? Moments where we didn’t understand, couldn’t comprehend our illnesses? That we can’t believe how f***ed up the body can get, and that it’s happening to us?

Like so many others, when I received a diagnosis of lupus, I didn’t know what it was. I don’t think I had ever heard of it before that time.

I am always amazed by those who became sick when they were very young, mainly because I’m not sure how they got through it then. I’m not sure I would have been able to. And I am humbled to live in a world with such people, but so sad that so many don’t get a chance to see a cure for their illnesses.

Will there be a cure in my lifetime for lupus and/or rheumatoid arthritis? I hope so. If not a cure, will I go into remission? Again, I can only hope.

A popular CF slogan is that “CF Means Cure Found”. So what does lupus stand for? Well, I spent some time thinking about this, and this is the acronym I came up with:

Let
Us
Please
Understand
Someday

Right now, for me, this is the best I can hope for, as far as my illnesses are concerned. I can not only hope that doctors learn more about these diseases, enough to really provide their patients with help, but I also hope that there will come a time when I really understand my illnesses, how they impact my life, and how I can live best despite them.

Last night, my boyfriend and I watched “And The Band Played On,” a captivating movie about the AIDS epidemic in the late 1970s and early 1980s. What struck me most about the film was how far we haven’t come in understanding and finding a cure for AIDS.

And there are so many other illnesses, including lupus, that this is true of. And so, while May is lupus awareness month, and today is World Lupus Day, I urge readers to look beyond lupus, to learn about other diseases, and to see how truly similar the chronic illness experience is. There are so many illnesses of unknown cause and cure. And that is the thing that has always amazed me. How similar the chronic illness experience is, despite having different illnesses.

Time Is A Luxury We Don't Have

“[…] I will remember you
Will you remember me?
Don’t let your life pass you by
Weep not for the memories […]”

-“I Will Remember You,” Sarah McLachlan

It’s spring, well at least technically, because if you’re in Michigan right now, it’s pretty freaking cold. But anyway, it’s spring. And with spring comes new life. No where is this more evident than in my blogging circle, as there are several bloggers who are pregnant/having babies. This is super exciting, but also gets me thinking a lot about time…

I recently read “Have a Little Faith” by Mitch Albom. I loved “Tuesday’s With Morrie” and decided to read Albom’s other books. In “Have a Little Faith,” he talks a lot about a second death, and not being forgotten after death.

And this made me wonder. Is this one of the reasons, maybe subconsciously, that many of us blog? On the surface, most of us do it to share our stories, and to help and inspire others. But could a small part of it also be that we worry, especially if we are taken before our time, that we will be forgotten? That the trials and tribulations, and the celebrations in our lives, will end up being and meaning nothing?

Time is different for those of us who are young and chronically ill. It’s no longer such an abstract notion, like it is for many healthy people our age. It is something more concrete, staring us in the face, and sometimes, if we listen hard enough, we can hear it ticking away.

I no longer measure time as far ahead as I used to. Days of little pain count for more than single days used to count for.

Maybe it’s not so much that we don’t have time, as it is that we don’t have the pleasure of being oblivious to the ticking of the clock. Maybe my friends won’t wake up tomorrow and realize the feebleness of the body, but 30 years from now, they’ll wake up, stunned that they are no longer the picture of youth. Hair grays, skin wrinkles, muscles become soft and weak, bones become brittle and stiff.

I know I am not ageless. My illnesses prove that to me everyday. I knew that less yesterday, and I will realize it more tomorrow. And I will be reminded everyday that some systems will work better than others. And eventually, some will fail, maybe even all will fail.

It’s not so much a question of if, but rather, of when. I’m not okay, per say, with this course of events. But I have no choice. That’s the way life is. And if time stops, there is no life at all.

Or maybe it’s that I wonder what causes so many of us to broadcast our lives, often very intimate details of our lives, over the Internet, to complete strangers. Is it because, when all is said and done, we are worried about being forgotten?

I stumbled across this article, which talks specifically about young people with terminal illnesses blogging about death, and chronicling their final days. The article states that our culture is very close-lipped when talking about death, but blogging is making such conversations more acceptable.

And there are many books these days – examples include “90 Minutes In Heaven” by Don Piper, and “The Five People You Meet In Heaven” and “For One More Day” by Mitch Albom – that in both fictional and non-fictional contexts, explore the question of what happens after life ends.

I’m not interested here in getting into what I believe or don’t believe about life and death. But I am interested in how the uncertainness of time impacts who blogs and why.

Why do we feel that this is our cross to bear, while most people live with their illnesses in anonymity?

Clearly, this is not a new question or concern. But who is exploring such concepts, and how, is new. Just as Facebook profiles come to immortalize those who have died, blogs too, become living records of those who write/wrote them.

So what do I want to leave behind? Right now, I’m just trying to figure out how to live life with illness the best I can. But we all have a legacy to share. And maybe, for me, this blog is a small part of that.

So how do you want to be remembered?

And how will make sure that happens?

(This summer I have plans to start a non-profit organization that deals with similar issues as those addressed in this post. More details to follow…)

Guest Blogger: Sara Gorman

About a month ago, I wrote a post about the book, “Despite Lupus”, by Sara Gorman. I enjoyed reading the book, but was left with a lot of questions. I contacted Sara, and she was nice enough to answer my questions, to be shared with my readers in the guest post that follows.

For those who haven’t read your book and/or blog, tell us a bit about yourself.

SG: I was diagnosed with systemic lupus 9 ½ years ago, at the age of 26. There was a time after my diagnosis where I just couldn’t imagine life ever being the same again - I never thought I’d be able to have children, I didn’t know if I’d be able to work, and I really didn’t know if my body could endure the pain and suffering caused by lupus much past my 30th birthday. Thankfully, things began to turn around once I started making changes in my life to accommodate the disease, a process I often refer to as, “working with the disease rather than against it.” It was a wonderful thing once I realized that life with lupus could improve, and that I could actually do something about it.

You refer to lupus as “she”. This is very interesting. How did this come about?

SG: From the very beginning, I thought of lupus as an adversary – as an opponent that needed to be won over, conquered, and even extinguished. It was just a natural step to personify the disease because it gave me an image upon which I could unleash my frustration, anger and resentment. In the end, I think it worked in my favor, because as I came to the realization that lupus really was an entity in and of herself – I learned that if I was going to live in harmony with the disease, I needed to give her the respect, consideration, and attention she deserved.

The spreadsheet is clearly an important aspect of your illness experience, but I worry that such cataloging would make me obsessive. Is there a happy medium between not knowing anything about ones illness and knowing every single detail? What does that look like to you?

SG: Sure! In my book, I offer a full spectrum of options – in-depth vs. not in-depth; long vs. short; thought-provoking vs. one-word (or number) responses – because most certainly, not every one wants or needs to create a spreadsheet. I can assure you, however, that any insight you have into what exacerbates your illness, what helps, what doesn’t, what medications are working and which aren’t, will undoubtedly give you a leg up in trying to live well with the disease. Anything you do – be it a tracking system, a journal, or a list you keep on the fridge of things to watch for– that allows you to become more engaged, enlightened and informed about your disease, the better!

You mention going to the National Institutes of Health (NIH) for a second opinion. Would you recommend that other lupus patients seek care at the NIH or other similar institutions (i.e. Mayo Clinic)?

SG: I had a wonderful and enlightening experience at NIH, so I would recommend it highly. However, what I would recommend above all else is that if you have doubts about your treatment, have questions about the manifestations of your disease that your doctor can’t (or won’t) answer, or feel like you need to get another perspective on what’s happening with your body, run, don’t walk, to get a second opinion, wherever that may be. There are so many reasons why seeking the help of another medical professional is a good idea – it will most likely bring to light options, treatments or therapies that you and your doctor haven’t explored and could (or even should), or it will confirm that your doctor has indeed been doing everything that should be done. T hat was the case with me – I went to NIH, and they confirmed that my rheumatologist was doing all the right stuff…it was just my disease that was out of control at the time. Thus, when I returned to my doctor’s care after a couple of months at NIH, I felt a whole new level of collaboration between the two of us. I was no longer scrutinizing his every move (because I realized that he really was doing everything he could to make me feel better – it just hadn’t worked yet), and I believe he had a new-found respect for his patient. He knew I was serious about getting better – now he could really get down to business.

You talk a lot about the workplace, and the way you describe it, the company you worked for when you first got sick and were adjusting to the changes that come with lupus, was very accommodating. What advice do you have for people with lupus who don’t find themselves in such an accommodating situation, or for people like me, who are in graduate school, where the implicit response is, “If you can’t cut it for any reason, you shouldn’t be here”?

SG: My office was extremely accommodating, and I consider myself lucky. And while I realize not everyone chooses to be open about their disease, I found that being upfront about lupus worked to my advantage. How else could I have explained my prolonged absences, or my reduced energy levels, or my inability to walk from one end of the office to the other? I tried to be very proactive about addressing the difficulties I faced at work – and that is the recommendation I would make to anyone faced with a strenuous or taxing work/school situation. Realize that your productivity, your attendance, your attention to detail, your ability to function, may slip – and you need to be prepared to address those issues. I would also recommend, no matter what situation you’re in, to really evaluate your work/school situation, and if you find that there are aspects of your daily commitments that are truly inhibiting your ability to live (and, of course, by my standards, I mean live well), perhaps there are some accommodations/ changes/ alterations you can make to schedules, workload, deadlines that will allow you to get better. I would encourage you to look outside the box – thinking of options that you may not even consider feasible – if your health is really suffering. Sometimes those changes can be very difficult to consider (and even harder to make), but if it’s your overall health and wellness we’re talking about…if it’s a matter of life and death…well, then, you many have to muster up the courage and inner strength to make them, so that you can even have options down the road.

Ultimately, you end up leaving the workforce altogether and “retire”. Do you have any advice for people with lupus (or other chronic illnesses) who aren’t in the position to take such a step?

SG: I had no idea I was going to let go of my career for good when I started down the path to living well. I made the first change at work because I literally could no longer function, but I figured I’d just take some time to slow down a bit, work from home one day a week, get some rest on my shortened work days, and then I’d be right back at it as soon as I “recovered.” But once I got a taste of what it felt like to feel good…and to be healthy…and to not hurt 24 hours a day, my husband and I realized that, that existence, whatever it looked like, was our #1 goal. And that goal doesn’t have to be reached by letting go of your career. That just happened to be the concession I was willing to make in order to make it happen. Yours may be completely different – I just encourage you to look long and hard at the obstacles that are currently keeping you from living well, and decide, based upon your own personal goals, dreams, needs, and desires, which one you should concentrate on removing so that you can live better than you are right now. It could be anything – treatment you’re refusing, the tropical, sunny vacations you don’t want to sacrifice, your “life’s agenda” you’re refusing to put aside – anything that is hindering your chances for a long, productive life. I talked of this very issue in a blog post recently on www.despitelupus.com, and a woman wrote into my blog saying that while she has chosen to keep her career, she chose to concede on having more than one child, because of her lupus. She felt that was an acceptable, necessary accommodation to make, in order to live well with her disease. It’s a very personal matter, and it takes some serious soul-searching to make the right choice.

You also talk a lot about pregnancy. You mention that pregnancy has a tendency to put women with lupus in remission, so it may seem like an attractive option for that reason. You also mention your sincere desire to have a family. What was it like working around your illness and working your illness into getting pregnant, with the final result being a healthy baby girl?

SG: For me, the most difficult part about wanting to get pregnant was realizing that my personal timeline for having kids might not coincide with the timeline that my body, my disease, or my health had for child-bearing (or rearing, for that matter.) Emotionally, it was very difficult to accept that I couldn’t do anything about that fact, and that I had to stop trying in order to allow myself to heal, emotionally and physically. I had to put my plans for pregnancy on hold for quite some time (years actually) while I built up my strength, got my disease under control, and got my body in a healthy, stable condition so that I could even start trying to have children again.

By the time I started trying again, I felt fabulous about the whole thing. At peace with myself, at peace with my body, and at peace with whatever was in store for the future. There had been so much desperation and panic surrounding the process the first time…and I realized after the fact that, that was no way to bring a new little life into this world. Of course, the greatest blessing is that little girl of mine. She is an absolute miracle – and an angel in every sense of the word…even on the days she doesn’t nap.

Your book is definitely a “must read” for those newly diagnosed with lupus. What advice do you have specifically for those who are lupus “veterans”?

SG: Just like I tell myself every day, I would remind the “vets” that living well isn’t a one time event. It takes a concerted effort and a daily commitment to managing the disease. I make decisions every day that perpetuate my desire to live well, despite lupus. And every once in awhile, I make a choice that doesn’t quite fit in with that motto. But the great thing is that every day, I have the opportunity to make the right choice.

A little off the topic of lupus, what advice would you give to patient bloggers, like me, who want to get published?

SG: The great news is that there are a ton of options out there for people just like you and me who have something to say. Self-publishing was an absolute dream for me – it worked within my timeframe (I was due with my baby in October of 2008, and knew that I could make my book “happen” with the limited time I had/would have), I got to keep control of my book, the content, the cover, etc., and financially, it’s worked out quite well. The flip side, of course, is that it takes a lot of work to self-publish, to market, promote, and get your book out there. And I had to work VERY hard to keep my expectations under control during the first 3 months the book came out. I was ready to hit it hard, but given that I have lupus, I couldn’t do that. I had and still have to pace myself…and my husband reminds me all the time that I can’t let writing a book about living well prevent me from living well. Smart, huh?

You title the last chapter of the book, “Life After Lupus”. What do you say to those of us who can’t really imagine that such a state exists?

SG: My reason for writing the book – my intention for sharing my story – is to provide hope to those who don’t have it, to those who have lost it, or to those who can’t seem to find it underneath the pain, suffering, and misery that lupus has caused. I was there not so long ago – and I am here now – poised and ready to tell you that life with lupus CAN improve – and that you can actually do something to make that happen. It might not be easy, or simple, or instinctual (which of us instinctively likes “compromising”?), but there are ways to make your life with lupus better, physically and emotionally. If you walk away with one thing from my book, my blog, or this interview – believe that you have the strength, courage, and hope to live well, despite lupus.

Thanks, Sara, for humoring me and answering all of my questions, for allowing me to share your answers with my readers, and for writing an informative and patient-friendly book about lupus. We can all always use lessons about living well despite illness.

And be sure to check out my post about the book, and make sure you head over to www.despitelupus.com and say “hi” to Sara!

Two Years And Counting: The Insight That Comes From Illness

On Saturday, my blog turns two! I can’t believe that I started this blog two years ago, just a week after receiving my diagnoses of lupus and rheumatoid arthritis. Since then so much has happened. Solu-Medrol infusions, my first inpatient adventure. I guess pretty much the usual stuff as far as these illnesses are concerned.

But other things have started happening in my life, too. I’m not sure when it happened, but these illnesses lost a bit of the primacy they had in my life. And I began to venture out in search of other things; love, romance, figuring out the things in life that really make me happy. And I’m not sure I would have been so keen to start such adventures if it weren’t for these illnesses.

I’ve come to realize that while illness made me doubt a lot about myself, there were parts of me that I must have been building up unknowingly. I don’t think it’s an accident that I really didn’t date much pre-illness. I think there were parts of myself that I needed to be okay with first. And I guess, in a roundabout way, I became okay with them.

For a while, I felt like I had given up on G-d, and didn’t know what role I wanted religion, specifically Judaism, to play in my life. I realize now that I did not turn away from G-d. In every morning that I wake up and persevere against illness, I am believing in something deeper than myself. This may not be the way you or my friends or my parents may conceptualize of G-d. They may see G-d as a more abstract and untouchable notion. But if I am going to believe in something, I have to believe in myself, and the journey that illness has taken me on, however fraught with difficulties it may be.

I had given up on the idea that life could be good, that I could be okay, really okay, in the face of illness. And it’s hard, for sure. There are days when I don’t want to get of bed and face the world. We all have our moments. And I’m learning to absolutely cherish and be thankful for the good times, when there is joy and little pain and I am happy.

The title of this blog is based on the song, “Closer To Myself”, by Kendall Payne. And I feel that this year, more than anything, I’ve done just that: “Digging deep, I feel my conscience burn/ I need to know who and what I am […]/ I’ve been everybody else now I wanna be/ Something closer to myself […]”

I think I’ve always been one of those people who wants to make a difference in the world. But illness has made me realize that before I can help the world, I have to help myself. I have to heal myself, if not physically, at least emotionally. And I certainly have a long way to go. I still have a lot of issues regarding my last two relationships, trying to understand how I let things get so out of hand. How I allowed myself to be treated in ways that I didn’t deserve. But I’m beginning to realize that despite illness, I am a good, worthy person.

I got tired of always being the one on the other side of the street when everyone else had crossed, even when the sign said “don’t walk”. When you live on what you think is the safe side, and that doesn’t work, it’s easy to move to risk and realize that, that doesn’t always pan out either. Illness has taught me that life is a constant balancing act.

And I’ve met someone who has changed my life. Talking to him on the phone or getting to see him is the best part of my day. I am a better person because he is in my life.

And there is somewhat of a disturbing realization. I’ve asked myself a lot lately whether I would change the way things are if I could. If there was a cure tomorrow, would I embrace it? Honestly, I’m not sure I would. Because I have to wonder the person I would be without illness. And even if a cure were found tomorrow, unless the offer was to reverse all of the time that has already been impacted by illness, I’m not sure that it would matter. I have been forever changed.

I was coasting through life before, not really stopping to look around and take in the minutiae that was happening around me. I enjoy being captivated by water about to boil, and watching long enough to prove that even if you watch a pot, it will eventually boil. I enjoy nature. I’m learning to embrace life. My life. Illness included.

I think I was living my life with a “today for you, tomorrow for me” attitude. I was living for other people. I wasn’t living for myself. But when you’re thrown into a situation where, in part, your survival relies on you putting yourself first, that equation suddenly changes and becomes “today for me, tomorrow for you”. And I’ve come to realize that there will be many tomorrows. Everything I don’t finish today will be there tomorrow. And if the people in my life are truly loving and supportive, they’ll understand this and be content with the choices I’ve made.

I don’t feel quite as hopeless as I used to feel. I can now look in the mirror and recognize the person staring back at me. Thinking back, it’s easy to not want to believe that I could have felt so down. But I was trying to figure myself out, and then illness came into the picture, and everything went off kilter.

I am so grateful for the community that has been created via my blog. I am so thankful for the support that you all have provided me. And I am so happy that you have been here to celebrate the good things and help get me through the bad. I don’t know what I would do without you. This blog wouldn’t be half of what it is without all of you, and I thank you for giving me a reason to keep soldiering on, on this crazy journey. Thanks for two eventful years. Here’s to hoping there are many more years to come!

When Your Body Calls, Who Responds?

“[…] And if you call, I will answer

and if you fall, I’ll pick you up

and if you court this disaster

I’ll point you home […]”

- “Call and Answer,” Barenaked Ladies

One of my worst fears was recently realized. I was “sick” with my boyfriend (the doctor). I got a lupus headache that totally ambushed me. It was a bad combination; my methotrexate day, time of the month, rain, and no coffee (TMI? Sorry!). I thought I had caught it in time, but before I knew it, I was laid-up on the couch, rolling around with nausea and dizziness, wishing someone would stop the incessant pounding that was pervading the right side of my head and my brain stem (or kill me).

In my past relationships, for whatever reason, I was never in the presence of the person I was seeing when I was flaring or not feeling well. And I dreaded the day when this actually happened.

But he didn’t run away. He didn’t coddle me to death, either. He was the perfect balance of caring and supportive, and hands-off. I felt terrible because he was leaving town for a week the next morning, so needless to say, the romantic night I had planned for did not go the way that I’d hoped.

But I guess that’s the way these illnesses work. If they were predictable, they wouldn’t be so damn frustrating and annoying. If they weren’t so pervasive, I would never have to cancel plans, plan like crazy, or totally kill a romantic evening.

I had tried not to open myself up to the possibility of him ever seeing me this way, but that’s not quite realistic, is it (especially when we are seeing so much of each other these days)? And the fact of the matter is, when it happened, there was nothing I could do but be a sitting…er, laying…duck. I didn’t have a choice in the matter. I was down and out.

I apologized a million times for the way the night had gone. But he was just glad that I eventually felt better. Better enough, in fact, to finish the three-quarters worth of uneaten dinner that he saran-wrapped and kept waiting for me at the table.

A few days later, on the phone, I could feel him going into “doctor mode”, asking me how often I get headaches like that. But he can’t help it, and I’m better for it. It may make me take some of my symptoms more seriously, and view them as less fluke-y than I have done previously.

And I do feel like there is a lesson to me in all this. And it’s a lesson I feel I should have learned already. When my body calls, I need to respond. Truth be told, I had rib pain a few days before, I had been feeling a bit run down, but I kept plugging away. I am a bit frustrated with myself because I feel I keep saying that I’m totally blindsided by symptoms when the reality is that there are signs there, signs that I opt not to notice, for whatever reason, until after the fact.

But just as it was hard to get diagnosed until I was dealing with a whole constellation of symptoms, it’s hard to be proactive when I’m not sure exactly what only one symptom means. One symptom does not a flare make. At least I don’t think it does.

And with the right person, anything is possible. Worst fears are no longer worst fears. And bumps in the road are just that. They’re no longer insurmountable if we can get through them together.

So for now, we’ve survived round one. We made it through the first incident of me needing to be scraped off the couch. It wasn’t fun, glamorous, or sexy, but in some ways, it felt totally natural, like we’ve been dealing with this stuff as a couple forever. It made me realize, for the first time, that I can really get through this, especially if I have someone by my side who is willing to stay the course with me.

And realistically, this kind of care and concern will be reciprocated. While he probably won’t feel good far less often than I will, I’ll be there for him, even if it is just to tuck him into bed.

The truth is, it’s definitely nice to have someone around in moments when I’m not feeling my best. But ultimately, first and foremost, when my body makes the call, I need to be the first to respond.

Breaking My Own Rules: The Doctor Is In The House

(This isn't my man. But this is a gift he got me when he was out of town. He said I need to have a doctor in the house when he's not around. Isn't he sweet?)

There has been some good excitement in my life as of late, but it has taken me awhile to sit down and compose my thoughts. Because in some ways, I feel like I’ve become pretty good at dealing with the bad stuff, but not as good as soaking up the bliss.

So I guess I should start at the beginning. Our first date…

When I first started Methotrexate (MTX), I was taking it on Tuesdays. This particular Tuesday was bad. I slept from 12:30 until 3:30 in the afternoon. When I first started MTX, I would feel progressively stronger and better as the week went on. But for awhile, I would get more and more exhausted as the week progressed, and then I’d be staring Tuesday in the face again, wishing that it would go away.

I had a first date set up, which I really wanted to cancel, because I just wasn’t feeling myself. But how can you cancel a first date? If you want to attempt to make things work, you can’t. So I didn’t, and tried to make myself look better than half dead. But what do you wear when you’ve been sleeping all day and get out of your pajamas at 7 o’clock for a date?

I was worried. I’ve never dated a doctor before. Would he be able to read on my face or by the way I carry myself that I’m sick? Would it be obvious to him? And because he’s a doctor, he spends like 100 hours a week with sick people. Why would he want to come home to me? Man, insecurities are a bitch. Clearly, I have issues…

So the first date went well. And there was a second date. And the third date came and went with no disclosure of illness on my part. And I found myself hating myself because I didn’t ever want to have that conversation. Things were going well, and I worried that illness was going to mess it up. This is why I’ve always disclosed so early in the past, so that I didn’t have to worry about getting attached to someone, only to have them run the other way. Never before had breaking the rules felt so bad…

And there’s a part of me that feels this should be easy. There are worse things in the world to have to confess to someone. But then there’s another part of me that feels like there is never a good time to break this news to someone.

I wish it could be done in a “by the way” kind of way. But that doesn’t feel quite right, either. I don’t want it to seem huge, but I don’t want to minimize it, either.

Disclosing illness isn’t a requisite part of patient education, probably because doctors are notoriously bad at delivering news. They make sure you know about procedures you’re going to have, and medications you are going to have to take (when and how to take it), but they don’t prepare you for having to tell the people already in your life about illness. And they certainly don’t prepare you for having to tell the new people in your life.

But the truth is, more than worrying about what to say and how to say it, I worry about what happens after. Does the person take one look at me and run the other way? Do they hug me and tell me that everything is going to be okay? Are they relieved that “that’s all” it was, after being prepared for the worst – “we have to talk,” “there’s something I need to tell you,” etc.

When I finally got around to disclosing, I felt like a deer in headlights. And I felt myself going into shutdown mode. “There’s something I need to tell you about, but I really don’t want to…” I can only imagine what he thought might be coming next, because he honestly sounded relieved when he heard what I had to say.

I’ve found somebody, who, when I finally disclosed, basically said “so what.” He feels bad that I have to go through what I do, but it doesn’t change anything between us. With the right person, this isn’t earth shattering news. The other person says something like “we all have our issues,” and move on. That’s exactly what I was hoping to hear, but didn’t think anyone would ever come close to telling me that.

I’m forced to be reminded that not everyone is like my ex. And that the right person won’t see me as damaged, not whole, and in need of fixing. But it’s that notion that makes me so insecure about sharing this news. I realize now, that my last relationship was not a good one. But I didn’t know any different. I allowed myself to be treated poorly because I agreed with the notion that I was damaged, not whole, in need of fixing, and not worthy of love. It’s hard for me to sit here and admit to this. But now that I know that relationships can actually be good, it’s harder to allow such treatment to happen again.

I’ve realized that in my past relationships, I wasn’t myself. I pretended to be something I wasn’t. It wasn’t intentional. I was trying hard to make things work, thinking that I didn’t deserve more than what was in front of me. I started wondering if it would ever be possible to be the real me, illness and all. But I’ve met a person, who not only accepts that side of me, but embraces it, asks questions, provides answers, and makes me feel like myself is the only thing to be.

And it’s also in that moment, of unqualified acceptance, that for the very first time, I’m glad that things didn’t work out with my ex, because I see all I would have missed if I would have settled for someone who didn’t treat me the way I deserved.

The truth is, I’m so glad that I didn’t cancel that first date. I feel so lucky to have met such an amazingly wonderful guy.

The doctor is in the house, and for the first time ever, that’s a good thing!

“Despite Lupus”

I had taken a break from reading books about lupus or rheumatoid arthritis or chronic illness, mainly, I think, because I have really been entrenched in illness for the past few months. Things have been quite up and down for me, and experiencing lupus flares after months without them has taken both a physical and emotional toll.

“Despite Lupus” has seriously been sitting on my shelf for probably close to a year. But I just haven’t been feeling it…until now…

Sara Gorman’s story sounds like so many young women with lupus, including my own. We’re at the top of our game, never stop kind of people…and boom…lupus changes all that. And for most of us, we were fairly healthy until we weren’t anymore. Although luckily for Sara, diagnosis came quickly after her first symptoms began to show. Mine went unheeded for years.

I think one of the main lessons of this book is a simple one. When it comes to lupus and the challenges that come with it, you have to be real with yourself. As Sara talked about all of the things she can no longer do or has had to accommodate, I’m struck by the thought that lately, more and more often, without even asking, someone is helping me put my coat on. I can get one arm in, but can’t maneuver the other enough to get the other arm in. It’s frustrating. It’s discouraging. It makes me feel like I’m 80 years old. Bras have become a chore for me, too. I’m finding that if I can maneuver my arms enough to swing it on, I’m partial to front closures (sorry if that’s TMI).

But who would have ever thought that at 24 years old, I’d be so concerned, not whether articles of clothing are fashionable, but whether I can get them on myself? I certainly never did.

Sara is the ultimate cheerleader. As I read the book, I imagined running, and having Sara running alongside of me, coaching me on, telling me I could do it. And I haven’t run in years. I also haven’t set foot in a gym since an acquaintance of mine contracted MRSA from the gym a few years ago. “Despite Lupus” makes me want to take back the things that lupus has taken away from me. Of course, there are things that I’ll never be able to get back. But there are others that I could have if only it weren’t for the fear that is standing in my way.

I buy purses based on whether I’ll be able to carry them both in my hand and on my shoulder. Silverware, plates, and cups all get a similar test (minus the shoulder part). So do books. Are they easy to hold? Will my hands and wrists hurt after only a few minutes of holding them?

I no longer wear my hair straight, because of the time and effort it takes to dry and straighten it, unless I’m having it done at a salon. Otherwise, I’ve come to wear it wavy/curly – which is actually what it is naturally – because it hurts my arms too much to style it.

There are many times over the last few years that I’ve wanted to go for a run. I was never a big runner to begin with, but it seems that as soon as I could no longer do it, I wanted to. Go figure!

I wish that I could have Sara on one shoulder, competing with my devilish side of me that seems determined to make many of the mistakes Sara warns against.

Sara talks about lack of control. I, too, cried when told I was being admitted to the hospital. It was the first time that lupus hit hard and I was unable to hit back. There was nothing I could do. It had, simply put, gotten the better of me.

The point of all of this is that “Despite Lupus” has made me look at ways my life has changed because of lupus. It also makes me realize that in some ways, lupus, while making life decidedly more complicated, takes me back to the basics of things. Sara encourages readers to measure life’s moments in new ways, ways that used to seem small and insignificant, but are now so precious and important.

“[…] my future of living well would be my greatest success yet to come” (181).

Yet again, I find myself deciding whether to do the lupus and arthritis walks. My feeling is that as long as I am able to walk and well enough to do them, I should. I couldn’t even touch them the year I got diagnosed. But I did both last year and think it may be a good tradition to start, especially because there are people who are willing to do them with me.

My illness outlook has certainly changed since I was first diagnosed. The year that I was sick and trying get diagnosed, I tried to keep things as normal as possible. I pushed myself way too far, and it was certainly at the expense of my health. I had planned to wage war. When lupus hit, I would hit back harder, being stubborn and headstrong. Not letting the disease get the better of me. But I’ve learned as of late to stop fighting, because it’s not a fair fight. It’s not a fight that I am going to win.

So I have to make difficult choices. I was asked recently if lupus has changed my plans for the future. How could it not? I always thought I wanted to work at a Level One Research university. But I’ve realized that in order for me to be competitive in that kind of environment, I won’t be able to be as healthy as I possibly can be. I do realize now how lucky it was that I really became sick after starting graduate school. While it made my first few years of grad school impossibly difficult, had I gotten sick before, I probably never would have committed myself to a five plus year PhD program.

So I am doing what I can, despite lupus!

*****
(Gorman, Sara. Despite Lupus. Four Legged Press, 2009.)

Patient Knows Best

During my last flare, one of the lymph nodes in my left arm became swollen and painful. Nearly two weeks later, more nodes were involved and I was in a great deal of pain. This is the first time that this has ever happened. I had e-mailed my rheum to brief him on the situation, and when it got worse, I made an impromptu appointment to see him.

The more I thought about it, the more it dawned on me that this was the same arm I had cellulitis in, for which I was hospitalized in October (see Adventures In The ER And MPU). And the pain was very similar to the pain I had during that time. Imagine someone wrapping a tourniquet around your arm and it getting tighter and tighter. My arm was in so much pain and so tender that I couldn’t even put deodorant on. But within two days of starting an antibiotic, my arm started to look and feel much better.

I saw my rheum last Wednesday, who told me that cellulitis can often incubate in the lymph nodes, and that this was likely a secondary infection; that Methotrexate (MTX) had knocked my immune system just enough to cause the cellulitis to become active again.

Now wouldn’t it have been nice if one out of the bazillion doctors I saw would have mentioned the fact that just because cellulitis appears to be gone, it can incubate? Maybe they were worried that this information would make me paranoid and hypervigiliant. But I don’t think it would have made me any more than I already am, especially since that October hospitalization.

But this experience, as with the cellulitis the first time, made me realize that I am the main arbiter of my health, and if I don’t look out for myself, no one else will. I have to trust my instincts. I knew that what was happening under my arm was not normal. And the more I connected the dots, the more I worried that this was something serious, more than a cut from shaving or an ingrown hair. And yet, I waited nearly a week to make first contact with my rheum. I tried to convince myself that whatever was going on would resolve on its own, but instead it only got worse.

In America, the land of consumerism, it used to be that the customer was always right. Not so anymore. But if such a maxim still held, I wish the same also held for patients. After all, we keep our doctors (and the pharmaceutical companies) in business. And yet our word is often seen as hearsay. And maybe this is self-fulfilling and causes us to think that our opinions should be taken with a grain of salt. After all, I haven’t gone, and don’t plan on going, to medical school. But while I may not have a degree in medicine, I do have the market cornered on my body…most of the time, anyway…

And I think my rheum knows by now that he only hears from me between scheduled appointments if something is seriously not right, and in need of his attention. He also knows that given the original cellulitis infection, the pneumovax debacle, he is the one I go to first for anything more than routine issues.

Anyway, at my appointment, my rheum had a very “green” medical student come and talk to me first. She was asking all sorts of bizarre questions. Have I been exposed to industrial waste? Do I do monthly self breast examines? I could tell where this line of questioning was going. The “Big C.” It’s not like I hadn’t entertained that idea in my mind already – fever, swollen lymph nodes (But apparently, according to my rheum, issues related directly to lymph nodes aren’t tender to the touch. Who knew?). But given that the original node swelling had been related to a flare, I figured it had to be related to that. And not the fact that I drink radioactive sewage for breakfast…just kidding!

In some ways, I had some vague idea of what was going on. I didn’t need some med student trying to convince me otherwise. And my doctor came in, took a look, asked a few questions, and pretty much knew what was going on, too, based on all of the information I had provided for him via e-mail.

So I’m off MTX, again, and hoping I’ll be able to go back on it in a couple of weeks, once I’m off the antibiotic (Keflex).

More importantly, though, I am also reminded how much medicine is an inexact science. Doctors can only do so much, especially given the resources they have available to them. This whole re-upping of cellulitis is a perfect example. I’m on MTX so it can attempt to reign in my crazy immune system. But the catch is that if it suppresses my immune system too much in the other direction, I’ve opened myself up to a host of other issues, including pesky infections that my body is incapable of fighting off. (And as of this week, the picture for new drugs to treat lupus and rheumatoid arthritis got a bit more dismal)

So what’s the next step for me? I’m not really sure at this point. I’m hoping that I can go back on MTX, at least until my next (scheduled) appointment with my rheum in June. And from there, hopefully finding a drug that I can tolerate, does a pretty good job of reducing my symptoms, and doesn’t try to kill me in the process. But at this point, I’ve resigned myself to the fact that, that may be asking for too much. The thing I do know for sure, though, is that when it comes to my health and the care I receive, I know best!

And speaking of patients, check out the latest edition of Patients For A Moment, courtesy of Duncan Cross.

Always Something There To Remind Me

After hosting Patients For A Moment #18 and asking other patient bloggers about their relationship with illness, I decided that I should explore my own. I was a bit forestalled in this because I was hit with several lupus flares in February, which quite honestly, took me very much by surprise. Because these flares brought with them symptoms that I haven’t experienced in months, maybe even years, and also came with symptoms that I have never had before.

Flares are the direct hits, the most extreme example of my body in turmoil. My latest flare began with my right rib hurting. I guess you could call that my “universal sign” for a flare. That’s one of the very first symptoms I had way back when I first got sick. Then comes the headache, which seems to prefer only one side of my head – actually, the flare seemed to favor one side of my body – only to be followed up in the morning by the “lupus hangover.” And as I was sitting battling a headache and nausea, I realized that I did not miss these kinds of things.

I had a day. The signs were there. I had a freaking day to stop my speeding freight train of a body from derailing off the track. But I didn’t.

You know how else I knew I was flaring? I brushed my teeth and the toothpaste gave me heartburn…

I never realized before how my breathing changes when I’m in a flare and in pain. Somehow I’ve adapted to a kind of deep breathing – slow deep breaths – that seem to be one of the only things that keeps me at all calm and prevents me from freaking out when my body is going crazy.

And for the first time in two and a half years, I cancelled an appointment I had. I tried to gear myself up, telling myself that if I just threw some clothes on and headed into the frigid Michigan winter, I would make it. But then my head started pounding and the nausea came on strong, and I really thought that if I went somewhere I would either puke or pass out, neither of which sounded appealing. So I didn’t do it. And I knew that I was doing myself a favor.

In these moments, when every single movement is painful, and I can’t believe it’s possible to feel as bad as I do, I catch myself wondering what I did to cause my body to punish me so relentlessly.

Almost in the same instant that such thoughts enter my consciousness, I tell myself that I need to push such thoughts to the furthest corner of my mind.

It’s easy to want to find a trigger for a flare. Maybe I stayed up too late, or didn’t eat well enough, or worked out too hard. The list of what I could have potentially done wrong is endless.

But such self-blame is counterproductive, especially given the fact that I am no longer on meds specifically to treat lupus. My rheumatologist and I agreed at my last appointment that the RA was the bigger problem. But now I’m not so sure. Even though it seemed like Cellcept wasn’t doing anything, is it possible that it was and I just didn’t realize it?

The truth is, I will never know what triggers these flares, and the fact is, it is most likely a very complex combination of things. And as bad as flares are, there are other things, too – small reminders…

No matter what I’m doing, I can be feeling great, and then boom, just for good measure, I get reminded that no matter how healthy I may feel, if even for a second, I’m not.

There are certain things I do, which no matter how I feel going in, cause me pain. For instance, I can feel fine, have very little pain, and as soon as I start doing my workout video, it feels like someone is trying to pull off my arms and legs. Yes, it feels like someone is trying to dismember me (or at least it feels like what I imagine it would feel like to be dismembered). Nice, huh?

Every time there looks like there will be a reprieve, some other system gets f***ed up or something goes wrong. The past two and a half years have been a nearly constant onslaught of ridiculousness.

Even my insurance company insists on reminding me that I’m sick (see picture at beginning of post). Talk about Big Brother. I think it’s their way of making sure I realize how much more I cost than “normal” people my age.

And I keep having to be reminded that I haven’t been at this for that long. Next month will mark just two years since I received the diagnosis of both lupus AND rheumatoid arthritis. But honestly, it feels like 10 years. It feels like so much time has passed, and really, not very much time has passed at all.

As much as there is physical pain, there is so much emotional work and upheaval that come with flares and other signs of a body that is battling itself. And it’s exhausting.

I’ve been dealing with some other health issues, which I will hopefully post about soon. But the truth is, I feel like I’ve hit my limit. We all have a breaking point and I feel like I’ve hit mine. I am so ready to be taken off all the meds, as lately, they seem to be doing more harm than good. Sometimes I feel like illness has made me a stronger person than I was when I was healthy. But right now that seems like a pretty big price to pay from always having to be on guard about my health.

I am once again left to wonder:

Does this ever get any easier?

Is there ever a day off?

Because it seems to me that no matter how I feel, there’s always something there to remind me…

Patients For A Moment, #18

Welcome to the 18th edition of the patient-centered blog carnival, Patients For A Moment. The posts submitted were based on the following questions I posed to readers:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

Illness can be good and bad, and provide a wide range of emotions and experiences. For all, living with illness is a delicate balance, to be sure.

*****

What would it be like without illness?

Kathy, from the blog Making Noises, describes in the form of a poem, how creative endeavors help her escape illness and allow her to be “a sick chick no more”, in the post, Behind the lens.

Duncan Cross, from the blog of the same name, describes his relationship with illness like Ike and Tina Turner, in the post What’s illness got to do with it? Duncan wishes that illness wasn’t part of the picture, but it is.

In the post Ahead in the Game, Behind in Life, Brittney of The Road I’m On, talks about what it means to be a veterinary student living with chronic illness. Without illness, she says she’d be ahead in just about everything, but illness makes getting ahead difficult.

Elisabeth Greenwood, from the blog Redefining “Good”, suggests that illness is always there, like a pet, creating an unbreakable bond, in the post Fessing Up.

Annie Martin, and the blog It’s Time To Get Over How Fragile You Are, takes the good with the bad in the post Life With A Side Of Illness or Illness With a Side of Life?

Thank you for letting me be myself

In the post To Be, Or Not To Be,…, Maria from My Life Works Today, explores her relationship with illness, and suggests that many of the uncertainties she faces would be the same even if she didn’t have lupus.

Helen, from the blog Pens and Needles, writes about the future and efficacy, or lack thereof, of contingency plans, and how we have to rely on ourselves and our innate ability to get through anything in the face of illness, in the post Big Plans.

In the post The kindest of friends, Sandra, from the blog Healing Environmental Illness, puts a positive spin on the illness experience by examining all of the lessons that illness has taught her.

In a thought provoking post entitled The Perverse Benefit of a Diagnosis, Lisa Emrich of the blog Brass and Ivory, describes how having rheumatoid arthritis gives her the possibility of trying medications that may potentially help her multiple sclerosis, as well.

Pain pain, go away…

In the post Making Pain Go Away, Barbara Kivowitz of In Sickness and In Health, explores the trials and tribulations of titrating the dosage of medication, and what it means to not be in pain.

Jolene, from the blog Graceful Agony, beautifully expresses that while chronic pain becomes a part of everything we do, it is simply what we feel and not who we are, in the post Feelings of Uselessness.

Fibro Mom, from Fibro World, explores the question of whether there is a cure for chronic pain, in the post Fibromyalgia Is Not For The Fainthearted.

And finally, Kelly Young, Rheumatoid Arthritis Warrior, explains What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure, in a post that suggests how hard it is to explain RA and its varied symptoms to others.

*****

Thanks to all those who submitted posts for this edition of PFAM. I really enjoyed reading them, and the insights that you shared.

The next edition of PFAM will be hosted by Duncan Cross on March 10th.

“Patients For A Moment” Is Here February 24th

I’ll be hosting the 18th edition “Patients For A Moment” – a patient-centered blog carnival created by Duncan Cross – on February 24th.

Here are my questions for this edition, which your posts should be related to:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

If you would like to submit a post, e-mail the following to gettingclosertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put “PFAM” in the subject line. All submissions wishing to be considered should be received by 11:59 p.m. Sunday, February 21st.

Looking forward to reading your posts!

L-I-F-E

I was a little late, and didn’t end up submitting something for the latest edition of Patients For A Moment (PFAM), which was hosted by Selena at Oh My Aches And Pains. Selena’s question for this edition was, Love? Hate? What are the four letter words you use to describe your life with chronic illness?

Despite the fact that I didn’t make it in time to submit, I thought this was a really interesting question, and wanted to take a stab at answering it.

So, if I had to come up with a four letter word to describe illness, it would be life (L-I-F-E).

First of all, illness is a fact of life. At one time or another, everyone becomes ill. For some, this isn’t until they are old and in their final days of life. For others, like me, it happens in our “prime,” which is definitely sucky, but can also be character building and teach us things we never even knew about ourselves.

In a perfect world, illness wouldn’t exist. No one would have to go through the things that so many of us do. But the world isn’t perfect, and neither are we…

I also use the word life because illness has had a broad ranging effect on my life, both absurd and profound. It has caused me to have innumerable identity crises, but it has also forced me to show strength that I never knew I had. You never quite know what you’re made of until you’re called upon to face a situation that shakes you to your very core.

Whatever I was before, and whatever I intended to be after, illness has become inextricably linked with my identity and who I am as a person. Illness is not all of me, but it is a very big part. And I have to be realistic. Illness is a part of my life now. That’s just the way things are.

And illness is a part of life in that it doesn’t just affect the sick person. The people in my life have been impacted by my illnesses, as well as I have. Probably not to the same degree, but illness is one of those things that shows people’s true colors – those who truly love you will be there, even if, especially if, you are ill. Those who don’t, won’t.

Illness has also taught me the capacity to feel (F-E-E-L) in a deep way. I think I’ve always been a caring, feeling person, but illness amps up the senses. Good feels better and bad feels worse. But at the end of the day, I know that I am not numb to the world around me. I feel joy and pain; I am a part of it. Because that’s life…

I guess I might use another four letter word, suck (S-U-C-K). Lately I’ve become very adept at telling things (and people, but not to their faces) to “suck it.” Very mature, I know. Because the truth is, illness can suck. It can also suck the life out of you, physically and emotionally. But rather than concentrate on the negative aspects, I would rather focus on the fact that despite everything I’ve gone through over the past few years, and the fact that things do suck at times, I’m living. I’m alive.

And with every day more I spend on this journey, I’m learning that illness and life are not diametrically opposed to each other. There can still be life in the face of illness.

So, for better or for worse, this is my life…and I’ve only got one…so I’ve got to live with what I’ve got…

On a side note, be sure to check out Selena’s edition of PFAM. And I’ll be hosting PFAM on February 24th. You can base your posts on the following questions: What’s illness got to do with it? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

The Sacrifices We Make To The Medication Gods

I’ve been a bit absent from blogging lately because I’ve been waiting to get some closure on some issues I’ve had with Methotrexate (MTX).

MTX is the first medication from which I’ve seen tangible improvements in my arthritis. My pain is greatly diminished, and my joint mobility has visibly increased. So you’re probably wondering, is there a “but”? Yes, unfortunately, there is…

My rheumatologist’s office called me a few weeks ago to tell me that my white blood cell (WBC) count was low. Then they called last week to tell me that my WBC count was still low and my liver levels were up.

So off the MTX I went. A week and a half off of it, my elbows won’t bend all the way, my fingers are stiff and swollen, and my right hip is back to hurting on a daily basis.

I’m not going to lie. Being on MTX hasn’t been all butterflies and rainbows. There’s the tell tale nausea and dizziness. And I’ve gotten to a point where I wonder whether sleeping my life away is worth not being in pain. It causes the kind of fatigue that no amount of coffee can kill, the kind of fatigue that you have to submit to because it’s too great to fight it.

That’s why this situation has been all the more frustrating. Aside from marked fatigue, I have felt pretty good. So why couldn’t things, just once, go smoothly? It’s so frustrating to find a drug that actually works in some ways, but is simultaneously killing you…

So I’ve been going to the hospital once a week for the past six weeks to get my labs drawn. That’s not the ideal thing to try and diminish the primacy of illness in your life. It gets really old, really quick.

(And to add insult to injury, my doctor’s office somehow managed to give me the wrong lab requisition form, so I had been getting the incorrect labs done for several weeks. But that’s a whole other story…)

I am certainly not someone who loves to be on meds, especially the heavy duty ones I am currently taking. But I know that I wouldn’t be functional without them. Every time I have a flare, I’m reminded of just how bad things can get, and the meds seem like a small price to pay.

And oh, there are the sacrifices that come with prednisone. But the thing is, as much as I hate the side effects, I am always reminded of its wonders when I’m experiencing crippling pain – and I finally have to concede and take it. A few hours after I take it, I no longer feel like my body is made of lead. I know that prednisone doesn’t work this way for most people, but for me, I can take 10 mg. every once in awhile and I seem to be able to fool my body into thinking that it’s going to be getting more soon, but it doesn’t. And I always feel like an immobilizing weight has been lifted off my shoulders.

It also seems to me that any medication that says it will cause lack of appetite has that effect on me. Or causes really weird food cravings like my fixation with baked Cheetos, boxed macaroni and cheese, and orange juice – viva la orange – which thankfully, has finally gotten to the point where the combination is no longer appetizing and just makes me nauseous. Because that was a weird phase for awhile.

And lately, I have been so spacey. I can only hope that blaming it on MTX is truly the problem. In my first few weeks on MTX, I screwed up the appointment days/times of four appointments. That is not like me at all. But maybe my brain has ceased to function when it is not working on overdrive to cope with pain.

What I wish healthy people understood, is that none of these drugs are a cure. Every medication has its pros and cons, and I don’t think it’s ever an easy decision to make to start a new medication, especially one that is more aggressive than anything else you’ve tried.

It’s like, if the disease doesn’t kill you, the medication will. But society doesn’t view people who are on a lot of medication, for whatever reason, in a positive light. I was particularly frustrated watching “The Biggest Loser” a few weeks ago. The main doctor on the show made the main goal of achieving health to be being on as few medications as possible. It’s a nice thought, but in reality…

And all everyone seems to want to know is when I’m getting off MTX. I don’t know, and honestly, right now, I don’t really care. Yes, I would very much like to get off the meds, all of them, but right now, to me, feeling good is more important than some lame goal of banishing as many medications as possible from my medicine cabinet. I need to get my health in a stable place, which it hasn’t been in for the past several years.

I wish I could have the illness disclosure conversation and say that lupus and rheumatoid arthritis rear their ugly head once in awhile, but other than that, they don’t mean much. But that’s not the case. So for right now, for me, living well means taking a bunch of pills everyday in the vain hope that I can lead a semi-normal existence.

I heard from my doctor’s office yesterday that my labs (finally) came back normal. What a relief!

So for now, I’m back on MTX, and redoing labs in two weeks. We’ll see how long this love affair lasts…

A Slave To Medical Technology?*

A few weeks ago, I took this bag of change I had to a coin counting machine. I’ve had the change for maybe a year, and figured I probably had about $70 worth. Turns out I actually had almost $160 worth of change. Change that I take out of my wallet everyday and save, because I don’t like carrying it around. Basically “found” money.

Anyway, rather than save that money, I decided to buy an IPod Touch. My aunt and a friend’s husband had both recently purchased one, and it looked pretty cool to me. It’s not something that I absolutely needed, but it only ended up costing me about $30 because of the change I had turned in.

I never thought I’d be a slave to technology, but this thing is awesome. Aside from making me more hyper-organized than I already am, the best things are useful and cheap (read $.99 or free) applications that are useful to those of us with chronic illnesses.

(Check out my pictures of screenshots from ITunes on my computer…)

I’ve downloaded a medication tracker, iMedication, which allows you to put in the name of the medication, the dosage and frequency, and the prescription number and when it is due to run out. It keeps all of your medication in a very convenient list right at your fingertips. Much better than my handwritten index card that I keep in my wallet, which has to be re-written every time a dose changes.

I’ve also downloaded MyEmergency, an application that allows you to keep all of your personal information, plus next of a kin, allergies, a list of the names of the medications you take, medical conditions, doctor details, and insurance information.

Another great application is My Pain Diary Lite (Lite as in free). This allows you to rate your pain intensity (on a scale of 1 to 10; no silly smiley faces here), the type, location, and trigger of the pain, and the remedy. I think this is a good way to more accurately keep track of flares, which I haven’t been very good at doing. It’s also good for people who keep a paper pain journal.

On the whole, I haven’t found one application in which I love all of the features, that’s why I have several separate ones. There’s also Medical Records and My Health Records, which are both free. I just downloaded those and am going to play around with them.

Obviously, there are going to be some things that won’t get completely digitized any time soon, like prescriptions and lab requisition forms. But on the whole, I’m really impressed with what’s out there, which seem especially useful for people who have complicated medical histories and health issues.

Although I guess there’s always the question of whether you really want to put all of your information in one place because 1) someone else could easily get their hands on it, 2) what happens if the IPod breaks, and 3) what if you don’t have it with you when you need it? Also, I wonder how doctors these days feel about their patients using such technologies. Do they streamline the doctor-patient encounter or make it more cumbersome?

Along with fancy IPod applications, there are a plethora of Internet sites, some more social network-y and free – like Cure Together and Medpedia - and some more practical and expensive, like Minerva.

If you know of other sites/programs that you particularly like (or don’t), leave them in the comments. I’m interested to know peoples’ experiences with technology as it relates to chronic illness. Do you partake or opt to stay away?

* I have posted about these product out of my own personal experience with them, and not because I have received compensation, financial or otherwise, from these companies.

"Hello, Lupie!"

At a recent support group meeting I went to, the leader asked us at the end of the meeting if any of us were offended that she refers to us as “Lupies” in her e-mails.

Personally, I’ve never been particularly fond of the term. But it doesn’t bother me, per se, that she uses this greeting. But apparently, it bothered someone. Because she received an anonymous complaint that someone found her use of the term to be offensive.

I cringe at how political everything is these days. Take, for instance, the recent Facebook meme that asked women to proclaim their bra color in their status update to raise awareness for breast cancer.

I admit, I did it, too. But then I read this article, and I saw the error of my ways. I hadn’t given much thought to the fact that many women who have had breast cancer can no longer wear bras. So in some ways, it made all of us tit-ified women seem like we were elevating ourselves above women who can’t wear bras or no longer have breasts.

There certainly is a pride that comes with supporting our own causes. But I think we do this, sometimes in detriment to ourselves, because we have limited the scope and range of our support. It is neatly and conveniently tied up in our specific illnesses. But as I have said many times before, regardless of the particular illness, chronically ill people, generally, have a lot in common with each other.

Lupus has been getting more attention lately, but the battle doesn’t start and end with lupus. Like many illnesses that impact mainly women, lupus remains the “bastard child.” And there are many other illnesses out there that get far less attention than they deserve.

When I was first diagnosed with rheumatoid arthritis and possibly mixed connective tissue disease, I remember being very dissatisfied with this. Neither explained the whole story, and I didn’t want to get lumped into a vague disease category. When I received the diagnosis of lupus, in addition to rheumatoid arthritis, it made sense. And it gave me a box to put myself in.

But I realize now that the box may not be all it’s cracked up to be. Because so many of us have many other illnesses on top of our primary ones. I now have Raynauds, and the jury is still out on a few other auto-immune issues. So in some ways, the “check a box” mentality is severely limiting.

Lately, I’ve been at odds with various people about the role that illness should play in my life.

When it comes right down to it, I think you have to own it. Sometimes owning it means making it more visible for yourself. And sometimes it means making it more visible to others.

If I don’t do it for myself, then I do it for all those 20-something women, who, in the prime of their lives, find themselves having strange and bizarre symptoms that no doctor can seem to figure out. And for those who start having joint and muscle pain after working out, which eventually never goes away. Because I’ve heard this story all too often from those I have met who have lupus.

I guess my point is, when it comes to support, healthy and sick people play very different roles. I have established that there are certain people in my life who are never going to make an effort to understand my illnesses. And really, the only people that get to hear everything, are my fellow “Lupies,” who can understand every part of this journey.

Believe me, I love the healthy people in my life, but sometimes they really just don’t get it. And there is a huge part of me that is grateful that they don’t, because if they did, it would probably be because they’re sick, too.

When I was in the hospital in October, my room phone never stopped ringing. I think it drove the doctors kind of nuts because every time they’d come in to talk to me, I’d be on the phone. And there was a big part of me that wanted to tell them that, that wasn’t my real life. And I knew that as soon as I was out of the hospital, things would be back to “normal.” The hospitalization made a lot of people take notice, who hadn’t before.

But it’s like when you spend months and months, or even years, planning a big party. And then the party comes, and it is over with in two seconds. There’s a huge letdown afterwards. Getting out of the hospital certainly wasn’t a letdown, but some people going back to the way they had acted pre-hospitalization, was.

This is all to say that we all make mistakes sometimes. Even those of us with illness don’t always say or do the right thing. Sometimes following the crowd supercedes common sense.

There is so much competition, even between groups that deal with the same disease. So who’s being helped in all of this? And who’s being hurt by the lack of cohesion? If it was the organizations that were being hurt, then they certainly wouldn’t be so fervently against each other. When it comes right down to it, it’s the patients that suffer the most, not from disease necessarily, but from a lack of readily available support.

I’ve wondered quite often why none of the doctors I’ve been to have had any resources or literature available. Sure, now my doctor asks me to sign up for research studies, but that’s because his colleagues are doing it, and who knows what he stands to gain.

I think a lot of doctors see this as being a single patient fight. Doctors don’t really care at the end of the day if you want to stand up and speak out about your illness experience, or if you want to find a group to support you. Doctors might support events, such as walks, but again, this is to promote themselves and the newest drugs. They speak about a cure, but to me that’s not much more than a good rhetorical device. If you use the C word, you can command a crowd for sure.

I have often wondered what it would be like if lupus and purple became the “thing” that was plastered on cereal boxes, yogurt containers, and a myriad of other products. What would it look like if lupus was widely available for public consumption? I honestly think it would leave a bad taste in peoples’ mouths. I don’t think they would be comfortable with it, and I don’t think I would be comfortable with it, either. This isn’t about endorsements, even though that’s where the money is.

Clearly, I’m skeptical of the efficacy of these kinds of politics. If a certain group can’t agree on what terms they should be using, there are going to be great rifts between people with the same illness. Like I said, I’m not 100% fond of the term Lupie, but I think if someone with lupus really takes offense to it, it’s because they haven’t owned up to their illness.

In many ways, the beast is not these illnesses. The beast is the ignorance of healthy people. The beast is doctors who don’t listen to what we’re saying. And unfortunately, the beast can sometimes be ourselves, losing what’s really important, in the battle for recognition.

I think all of the politicking proves that we have to stick together. I shouldn’t have to divide my loyalty between lupus and rheumatoid arthritis. My body certainly doesn’t, so why should my mind?

The Ultimate "Coyote Ugly"

A month or so ago, I went to bed with a dull ache in my shoulders, which I assumed was from carrying groceries and other purchases after a shopping trip. When I woke up the next morning, it was clear that I was flaring. I could only extend my elbows half-way – and resigned myself to walking around like Frankenstein’s monster all day long – had a low-grade fever, and felt nauseous.

Lupus and rheumatoid arthritis (RA) are severe examples of coyote ugly. I never know what I’m going to wake up to. And I find that particularly distressing.

For those who don’t know, coyote ugly is an “urban” term that suggests that after a drunken night, you wake up next to someone in your bed who is so ugly that you’d rather chew off your arm to escape than wake the person.

And that’s kind of how I feel. Even though illness is not a person, I feel as though I’m at the mercy of something I don’t have total control over. And I guess a big part of illness acceptance is the lack of control aspect.

Lately, especially, I really feel like I don’t have very much control. I wonder: Do we control the medication or does the medication control us? Or is it a combination of the two?

We were at family dinner for the holidays, and my elbows were in such pain and of little use, I asked my sister, who was sitting next to me, if she could cut my food for me. Seriously. It was a new low for me. Being that I was off Cellcept and Methotrexate was not working yet, I guess I shouldn’t have been surprised that I couldn’t function up to what I feel is, or should be, my potential. But my “highest level of functioning” keeps changing, and it’s pretty hard for me to deal with.

Cellcept clearly did not work for me, and it may have even caused more harm than good. And Methotrexate seems to be a mixed bag so far. The day I take it, I get dizzy and nauseous. And lately, I’m exhausted a lot of the time. The thing is, the dizziness and nausea aren’t so terrible, but they’re just enough to make me wonder why I’m doing this to myself. And my rheumatologist mentioned increasing my dose, but I’m not eager to remind him of that fact.

Honestly, I think I was doing better when lupus was the bigger issue. As much as I thought that lupus was a problem, and it was (and still is to some extent), the symptoms were more consistent than my RA symptoms are. With lupus mainly came dizziness, nausea, headaches, and muscle aches, mainly in my thighs and upper arms. But I can go to bed fine, and wake up with swelling and stiffness in my knees, elbows, hips, wrists, fingers and hands, and shoulders, to the point where those appendages become pretty much useless. Clearly RA has the upper hand right now.

It’s not so much that I worry about waking up and looking at myself in the mirror, and seeing a stranger. I think I’m past that phase now. It’s more that I’m worried about what new symptom I’ll wake up to, or what part of me will have decreased functioning. I guess if we all lived life this way, we’d have no reason to get up in the morning. But I guess I’m still at a point where I don’t know I’ve pushed too hard until I find myself in so much pain that I can’t move.

I try to be optimistic that Methotrexate is going to make a real difference, that my arthritis won’t get worse before my very eyes. But right now, I’m not really sure what to think.

I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…

2009: The Year For Lupus

For all intents and purposes, 2009 seems to have been the year for lupus. There have been a lot of happenings surrounding the disease.

MJ – With the sudden and tragic passing of Michael Jackson, the King of Pop, questions surfaced about whether the singer suffered from lupus. I’m no medical expert, but based on what I’ve heard, I think that there’s a good possibility that he did have the disease. Keeping with this theme, I channeled my inner Michael, and went as him for Halloween (see pictures at beginning and end of this post).

“Lucy” – Julian Lennon and James Cook introduced the song, “Lucy,” which paid homage to the Lucy from the song, “Lucy in the Sky With Diamonds.” Lucy Vodden died of complications from lupus in September, at the age of 46.

What strikes me about this song is the fact that it’s about Lucy and her girlfriends. I think that, especially for women with lupus, this is empowering. It’s like, despite her illness, she was stilled loved.

I think that’s something that I forget sometimes. Sometimes I feel incredibly alone, like I have no one. But in reality, that’s not true. It’s really easy to focus on the places where support isn’t coming from; my program/department, men, the world in general, sometimes those closest to me. And it sucks! But this upbeat song puts things in a different perspective, even though it doesn’t explicitly talk about the disease.

In the music video, both Lennon and Cook are wearing the purple “Someone you know has lupus” bracelet.

You can find out more about the song here.

Benlysta – The first lupus drug in over fifty years made it into the news, suggesting that it may just be the next best thing. Here were my thoughts on it.

Me – For me, 2009 was more down than up. It began early on with the tragic death of my cousin, which sent me reeling. It continued with a search for answers about myself and others. There have been posts about love, dating, relationships, and babies. There was my first lupus hospitalization. There was the opportunity to travel, to talk about my illness experience, and to meet blogger friends.

Once again, my readers have come to my rescue. I’ve been overwhelmed by the comments that were left while I was away, and even though I may no longer get a chance to comment back to everyone, I want you all to know that I read your comments and they mean a lot to me.

Here’s to hoping that 2010 will be full of good things!