Patient Relations To The Rescue! (Definitely Something To Be Thankful For)

Do people die from medical red tape?

When I was discharged from the hospital, I was told that I needed to make a follow-up appointment with my GI doc within two weeks of my discharge – my GI doc who I didn’t see while I was in the hospital – I mean this to say that if she had seen me, I’d feel better about taking an appointment at a later date.

I called to make the appointment and was told that my doctor couldn’t see me until February. February?!? It’s November. I can pretty much guarantee that if I don’t get seen until February, I will end up back in the hospital before then.

The person I talked to was not only unhelpful, but also just plain rude (can you say nurse on a power trip?). I wasn’t trying to buck the system. My discharge papers clearly say that I need a follow-up appointment within two weeks. The last time I was in the hospital, they made an appointment for me with my primary care doctor a day later.

My boyfriend gave me some tips for strong-arming them into giving me an appointment (or rather, the proper language to use). Although I’m not very good at this type of thing. Something about not biting the hand that feeds you… So I called again…

The person I talked to was definitely more helpful than the first. But the best they could do was an appointment a month from now with the PA that works with my GI doc.

Of course I took the appointment. I’d be a fool not to, especially considering that I am still in pain and my gut is not working properly.

I remember how shocked I was when I first got sick, and I was told I would have to wait from November until January to see my rheumatologist for the first time. At that point, when I had from nothing to cancer, I honestly wasn’t sure I would be alive that long to make it to that appointment. I’m dead serious here, no pun intended.

I don’t particularly like that the ER has become my first line of defense. But at this point, if that’s what I have to do to get someone to take my symptoms seriously, then that’s what I have to do.

Anyway, I’m usually a person who follows rules and goes through the proper channels, but not when they are so obviously at the expense of what little health I have left. My boyfriend suggested that before he stepped in, I should contact patient relations.

I didn’t even know such a thing existed, and their offices are hidden in the annals of the hospital. But they were actually able to get results, and in a much faster manner than I. The person dealing with my case said the following: 1) The appointment should have been made for me by the discharging unit, 2) He wasn’t sure why GI is giving me such a hard time about getting an appointment, and 3) That all clinics should have built-in slots for exactly this purpose.

I mean, come on, I’m not the first chronically ill person to be hospitalized, and I certainly won’t be the last.

So I got a call this morning that I can get in to see my GI doc in two weeks. I was told that I should be prepared to wait. Guess what? They could have given me a day and no time, and I’d go and sit there and wait the whole day if I had to.

Certainly part of this is piece of mind. I know there is something going on, and I want to get a clear picture of it. I don’t want to end up back in the hospital, and I want to make sure that this problem is dealt with more aggressively than it was before I was hospitalized.

It always frustrates me when I am unable to get results for myself and have to rely on someone else. But GI was just being ridiculous, and causing me quite a bit of stress, no less.

We’ve all had negative doctor/nurse experiences. I think it comes with the territory of being chronically ill.

If you feel that you have been disenfranchised or treated unfairly, you should see if such a resource is available. I’m not sure that such a mechanism exists in private practices, but I suspect they do exist in most university/teaching hospitals.

I guess there are competent, helpful people still left in the medical bureaucracy, which is definitely something to be thankful for.

Happy Thanksgiving, Everyone!

Benlysta: Here We Go (Again)

Last July, I wrote a post airing my skepticism about the new drug, Benlysta. And several of my readers agreed with me.

Given, the news about the drug over the past several days, I find myself writing about it again, and singing a similar refrain.

I would love to be hopeful. I would love to be jumping up and down right now, and bouncing off the walls. But I’m not. After surviving my second lupus-related hospitalization in a little over a year, I am seriously questioning the efficacy of any and all medications at the moment.

I read a very interesting New York Times article that is at best equivocal about the benefits and risks of Benlysta.

Another interesting thing is that the stock of Human Genome Sciences, Inc., the maker of Benlysta, dropped yesterday after the FDA hearing, due to concerns expressed about the safety and efficacy of the drug. And Benlysta would be the first drug ever to make it to market for the company.

According to a Business Week article : “While the Food and Drug Administration advisers recommended approval of Benlysta yesterday, they raised enough concerns about safety that U.S. sales may be limited […].” Further, the article states that it“works well enough to outweigh risks of suicide, infection and cancer.”

I’m inclined to say, that’s all? That’s all we get? That likely wouldn’t have kept me out of the hospital. It wouldn’t keep me from having a throng of doctors. And would it minimize my medication regimen? Maybe. Maybe not.

What I really want is a cure. I don’t want to be sick anymore. I don’t want my number one job to be that of a patient. What I really want to be and feel is normal. I don’t want a powerful drug to create a veil of normalcy. I simply want to be. No matter how good this new drug is, it isn’t going to work for everyone. There will be side effects, which could potentially be worse than the disease, itself.

Overall, I feel like a lot of the story is missing. And I don’t think we yet have all the facts to make an educated decision about whether or not to utilize this drug if given the opportunity.

Medication decisions are extremely personal, and of course, need to take place in concert with medical professionals. But I do caution readers to remember that there are many players involved in this approval process, and I have to wonder if the patient is really first on the priority list when deciding the fate of this orphan drug.

I feel like I’m becoming a so-called lupus drug frequent flyer. I’ve been on plaquenil and prednisone since I first got sick. I was on CellCept (off-label), but it had limited efficacy. I’m on Methotrexate now, but I am questioning it, too. It seems like my body gets comfortable with drugs and they just kind of stop working. So would the same thing happen with Benlysta?

Again, I don’t want to get ahead of myself here. Right now, what I want the most is my pre-illness life back, and I fear that’s something that no drug will ever be able to give me.

So how do you feel about this latest news? Does it fill you with hope, fear, a combination of both?

Worst Date Night Ever (And It’s All My Fault)

Is illness always in bed, a third party waiting to get in on the action?

I spent this past weekend in the hospital with my boyfriend, spending from around 5 o’clock Friday night until a little after 4 a.m. on Saturday in the ER, and was admitted from Saturday morning to Sunday afternoon.

I had, had pretty severe pain in my right side for about four days. I do sometimes get a pain in the area of my right rib if I am having a flare, but this was not like that, and not in the same place. And the pain wasn’t getting better, despite me trying to nurse it. I knew that going to the student health center would be pointless because if they felt around and saw where I was tender, they would assume appendix and send me to the ER. So in a way, student health would simply have been an unnecessary step.

My boyfriend basically agreed that given my complicated medical history and medication regimen, the only real choice was the ER. So we put aside our Friday night (not) in favor of some time in the hospital, as if my BF doesn’t spend enough time there already, right?

As per usual, it wouldn’t be a medical experience for me if there weren’t some down right ridiculous moments. But that’s how I have to act in these situations, otherwise I think would totally go crazy.

I told the resident that for a body that is rejecting its own organs, it has certainly been good about keeping all the useless ones, too. She told me that was the best line she heard all day. No problem, I love to entertain.

So the running hypothesis was that I had appendicitis, which is what I thought, too. And that because I’m immunosuppressed, my body wasn’t acting exactly like a classic case. So I had an ultrasound, which ended up not even showing my appendix. Then I had a CT scan and was told that I did have appendicitis and would be having surgery. Then a few hours later the attending radiologist disagreed with the original reading of the CT, and that while I didn’t have appendicitis, I did have something going on GI-wise, especially since I had three doses of morphine and very little relief. I won’t give any more details – GI stuff can be downright nasty – other than to say that I have had some GI issues in the past, and that the problem got a bit away from me. I had been having some issues off and on for several weeks and kept saying that I needed to get in touch with my GI doc.

The resident asked how long me and my BF have been married (she obviously didn’t realize he’s only my BF right now). We replied that we aren’t married. She said that it was an awkward moment, and proceeded to tell me that the pregnancy test they did – standard operating procedure – was negative. And I said, well, it would have been a lot more awkward if you would have asked how long we’ve been married – and we said we weren’t – and the pregnancy test was positive. Maybe you had to be there, but it was pretty funny.

And you know how sometimes long-standing advice can come and bite you in the butt, literally? You know how your mother always told you to make sure you are wearing clean underwear? Well, you might also want to make sure that if you are going to end up in the hospital, you aren’t wearing clean underwear that is bright yellow and says “I Love Boys” on it. Yeah, that’s all I’m going to say about that…

The rheumatology people were their usual crabby selves. My rheumatologist didn’t come to see me, but a few people from the rheum clinic did. When they came in on Saturday, they basically said that they felt my hospitalization had nothing to do with them.

I thought that was a bit ridiculous. Because in my opinion, I have lupus and rheumatoid arthritis first. Everything else is secondary. I never had anything happen to me like either of my hospitalizations before I became chronically ill, so to me, this has everything to do with them.

The rheum guy came back on Sunday, and said he heard that I hadn’t been allowed to take my Methotrexate – I was told that because it’s a chemotherapeutic agent, there were only certain doctors who could requisition for it – that whole thing didn’t make a lot of sense, but it was probably better that I didn’t take it. Anyway, in my head I was thinking: Now you care? Now this has something to do with you? Oh well!

I think you can learn a lot from being in the hospital. A few lessons from this latest excursion? It made me realize how much I try and fit into a day or a week. It also made me realize that I much prefer orange Jell-O to raspberry (although any kind of Jell-O tastes like food from the g-ds after being NPO for 34 hours). This is really important knowledge, no? And I think I need to have an “illness” bag packed so I can be prepared if this happens again. You know how pregnant women have a bag packed just in case? I think this probably works well for chronic illness, too, especially since it seems like a few day hospitalization is becoming a annual pilgrimage for me, unfortunately.

So I am, or rather, my illnesses, are a total mood killer. On the other hand, maybe this experience was a litmus test for our relationship. If it was, my BF passed with flying colors. He was pretty amazing.

He spent the entire night with me in the ER, after having gotten very little sleep the night before. He was really calm, which is what I needed, especially when it looked like I’d be having surgery very soon. He also brought me some clothes, a coat to wear out of the hospital since I hadn’t brought one with me, and he even snuck in some food for me when I was no longer NPO. He did this all of his own accord. And he used some of his connections to make sure that I was taken care of.

Aside from my immediate family, I’ve never had anyone take care of me like he did. What would I do without a doctor in the house? My boyfriend, the doctor, that is! I know I screwed up date night. I guess I’ll just have to make it up to him.

(And I am relieved to be going back to my normal role as a patient, the one who takes a bunch of pills and doesn’t always feel good, rather than the one that is confined to a hospital bed)

(And I still may need surgery, but I have to wait to get in to see my GI doc in a few weeks)

(And kudos to my mom for being awesome and helping me navigate the world of adult diapers made for someone the size of a baby elephant)

Running Out

Saturday morning I woke up, and went to take Methotrexate, only to realize that I only had two pills left. I take six every Saturday.

I panicked. I looked at the two pills and contemplated what to do next.

Not take any at all?

Just take a third of my normal dose?

As I started to think clearly, I realized that the CVS that my prescriptions are at is only a few blocks away. So I threw some clothes on and headed out. Luckily they were able to fill my prescription then and there, so
I waited eagerly to get my meds.

I honestly have no idea how this happened, and this has never happened to me before. I don’t think I have ever come up on short on pills at the moment that I needed to take them.

I know I have to let myself off the hook for this. We all make mistakes. And in this case, it was easily rectified.

But where is my head? I knew that I needed to refill my prescriptions sometime during this week, but didn’t realize that I would run out of something, especially Methotrexate, before I planned to refill them.

Has this ever happened to you?

Has it happened when you didn’t have easy access to your home pharmacy?

What did you do?

How important is it to take every dose exactly as prescribed?

There must be room for error, because patients, and even doctors, are only human. We can’t do everything right 100% of the time. It would be nice, but that’s not realistic.

So how do we become the masters of our health domains, considering that we can’t be perfect patients 100% of the time?

“Out, Damn’d Shot! Out, I Say!”

So I’m channeling Lady Macbeth here a bit. But notice that the title of this post says “shot” and not “spot.” You can probably tell where I’m going with this.

With the change in weather, I have been feeling pretty awful, like I’ve been put through the ringer, always under the weather – joint and muscle pain, headache, nausea, sensitivity to smell, sensitivity to fluorescent lights – I’ve got the perfect mix of lupus and rheumatoid arthritis going on right now. So I decided that before I “really” get sick, I should get my flu shot, which I did yesterday.

But I’ve been avoiding it, for obvious reasons.

It was this time a bit over a year ago that I got my pneumovax, and ended up in the hospital for four days with a cellulitis infection. Don’t recall? Read Adventures In The ER And The MPU.

Not that it means anything, but I did provide information to the Vaccine Adverse Events Reporting System about the incident. I didn’t hear anything, but a year later they sent me a form, asking if the patient had recovered or not. I did fill out the form, explaining that I had a reoccurrence of the original cellulitis infection, and that I suffered emotional trauma as a result of the experience.

Don’t believe me? I’ve been avoiding getting the flu shot like the plague. I have never been a fan of shots and needles, but after the events of the last few years, I’ve endured more needles than I ever thought I would see in my entire life.

But the thought of putting myself in the position of getting a life-threatening infection – while I’m trying to do something to protect my health – doesn’t really inspire me to go ahead with it. The whole pneumovax debacle may have been a fluky thing, but when something like that happens to you, it doesn’t matter what the odds are, it just sucks – and really tests your faith in the entire medical establishment.

I have a made a promise to myself never to have a shot administered at the student health center again – maybe this is irrational, but that’s the way it’s going to be. But can I really trust someone who works in occupational health? Have they versed themselves in the packaging material that comes with the vaccine before they give them or only after someone has a problem?

I also decided that I would get the shot early in the week, and not at the end of the week, like the pneumovax last year. That made it more difficult to do anything about it.

Now I really don’t want to get into a discussion here about the safety and efficacy of vaccinations in general. There are plenty of people who view all shots as bad and refuse to get any at all. That is your prerogative. It is mine, as I have done on a yearly basis since my freshman year of college (that was almost eight years ago already (and before I was chronically ill) – yikes!) – and especially since I became chronically ill – to make sure that I don’t die from the stupid flu. So please, no comments about how I’d be safer drinking Drano than getting a shot in the arm, or the like – unless you have personal experience that qualifies you to have such an opinion.

And speaking of safety, I’m sure you’ve all heard about the Methotrexate recall already. This definitely begs the safety question. My feeling about this, although I take the pill form of Methotrexate and not the injectable kind, is that I am safer taking this medication and the others in my regimen, than I am going untreated. That at least gives me some peace of mind. (And I’m saying that about the drug in general, not that I’d be safer taking a drug that is tainted with flakes of glass).

So I guess that’s my philosophy when it comes to the flu shot, too. I would rather know that I’ve done as much as I can do – which isn’t very much – to protect myself from getting sick than not and have to worry all the time.

Plus, because I volunteer at the hospital, everyone who is not vaccinated by December 1st has to wear a mask. And you all know how much I love doing that… So it’s not only in my best interest, but in the interest of the patients I come into contact with at the hospital.

I do realize, that, based on how little is understood about many immune-system related ailments, especially those that “flare,” that there is some question about whether to get vaccinated while flaring, or if vaccinations can cause flare symptoms. Whether or not you decide to immunize yourself is a personal choice, albeit not necessarily an easy one for those of us who are chronically ill.

Can I sleep a little easier knowing I got my flu shot? Not necessarily. But can I breathe a little easier and not cringe every time I am on the bus and someone hacks up a lung. Definitely. Doesn’t mean I won’t get sick. Winter is going to be a long road, just based on how I feel already. But it means that, in some small way, I did what I could to be a dutiful patient and protect myself, even just a little bit, from all of the disease-carrying vectors around me.

The Power Of Transformation (Or, My Life In Plastic…Boxes…)

MAC Brave Red

(the name sold me)

 “[…] Feet on ground,

Heart in hand,

Facing forward,

Be yourself.

I’ve never wanted anything.

No I’ve, no I’ve, I’ve never wanted anything,

so bad...(so bad).

Cardboard masks of all the people I’ve been

Thrown out, with all the rusted, tangled,

dented God Damned miseries!!

You could say I’m hard to hold,

But if you knew me you know […]”

- “Good Mother,” by Jann Arden

I’m really trying to learn about myself right now. Part of it certainly has to do with the fact that I am about to embark on my dissertation, a project that will take years and boundless amounts of effort and enthusiasm.

In every meeting about it, the question on everyone’s mind is: will I be staying in Michigan the entire time I am working on my dissertation. My answer is that I don’t know. My boyfriend will be done with his research position in two years. He’s preparing for the next stage of his medical career, and will know a bit more about what that looks like in several months. I’d like to think that we will both be going to wherever he is. (Unless of course I barrel through and finish my dissertation by the time he is done and then it won’t be an issue at all).

I don’t think I thought of myself as the I’ll-go-where-you-go-no-matter-what type, but I despise the thought of a long distance relationship. Just from the short times that we have spent apart, I really don’t think I could do it for any lengthy period of time. It works for some people, but I don’t think I’m one of those people. And if I’m not planning on a top-tier academic job, I will have a bit more leeway in terms of my options. But the jury is still out about that, too. I’m trying to figure out exactly what kind of job I want.

*****

I’m learning to compartmentalize. I had three sessions with a personal trainer. She did these stretches and I literally thought my leg was going to break, but I felt so energized the rest of the day. And the next day, I did a three mile walk. Then I was exhausted. I think this is a metaphor for my life, in general. There needs to be balance in my life. And the part I really want to control, whether I’m healthy or sick, is really the aspect that I have the least control over.

I’ve realized that one of the reasons I’m so inflexible is because whenever I’m in pain, my go-to position is the fetal position. But pushing my body to its limits made me realize that mobility really is good for the joints. It’s a catch-22, but I am trying to be more active.

Although it’s funny, because in trying to compartmentalize, the more and more various aspects of my life get woven together. Maybe this is a good thing?

If there’s one thing that lupus and rheumatoid arthritis have taught me, it’s to live out loud, to not hold back.

I recently bought red lipstick. And some crazy shoes. I’m not saying that every transformation should be physical and outward. In fact, most of mine has not been. But the red lipstick has been on my bucket list for years and years, I just never felt confident enough to pull it off before now.

*****

I was recently going through some old things, realizing that I have organized my possessions in plastic boxes. It’s funny to take stock of the things that I’ve done in my life, the experiences I’ve had, and to have them cataloged in plastic boxes. All of these memories preserved, as if ready to be put in some museum.

I think that partially, this representation of my organized and anal side, has served a purpose that has gotten me through life, and through the beginning years of being chronically ill.

It’s rare that I don’t know where things are, and when I can’t find something I’m looking for, it can send me into a tailspin. So it makes sense that when I got sick and my world was unrecognizable, I demanded of myself keeping everything I could as orderly and together as possible.

But you can’t take the things with you…

So often over the past few years, I’ve found myself feeling restless, unwelcome, and out of place, like a stranger out of time. I no longer knew what had brought me to a top three graduate program in my field, or quite frankly, what I was doing with my life at all. Though a diagnosis of lupus and rheumatoid arthritis is not immediately life ending, it is immediately life altering.

Despite everything, I am moving forward and moving on. Despite how much the last nearly three years have been marred with pain, suffering, loss, confusion, and at least one million crises of identity, I’ve done it. And speaking of identity crises, please check out this great project that I am honored and excited to be a part of: Smart People on Bad Days. And check out my story here.

It’s about the fact that against the most formidable of enemies, I won.

But the enemy that I beat to get to the final stages of my graduate school career wasn’t illness. It’s not a fair fight, so I don’t bother battling. The enemy has been academia, and the doubters and naysayers that have gotten in my way, and made me question my place at this university, in my field, and ultimately, in the universe. The more I think about it, the more I also realize that the enemy was myself. I’ve been standing in my own way. And I finally got the hint and moved out of the way.

I haven’t felt this positive and hopeful in a long time. I haven’t felt that the future was worth making an effort for. But other things are going well in my life right now, too, and this makes me feel like somehow I’ve evolved beyond the person asking ineffective questions and trying to put things back to the way they were pre-illness.

But I am wise enough now to know that such efforts are completely and utterly futile. They won’t get me anywhere, and in fact, they’ll probably end up holding me back.

Here’s to looking forward to the next chapter…

Life is certainly different now than it was several years ago.

Yes, I can walk in these...

(And sometimes, retail therapy is just necessary)

The Greatest Gift

I read an article back in April about young people blogging about death. You can read my post here. The article chronicled Eva Markvoort, a Canadian, 25 year-old who had cystic fibrosis, and died in April from chronic rejection, while waiting for a second double lung transplant. She was an outspoken advocate in Canada for both cystic fibrosis and organ donation. And she was the subject of the documentary “65_RedRoses” (which as far as I can tell, is not available in the United States as of yet). She also authored a live journal/blog of the same name (which her parents continue to update).

I’m not sure what drew me back to her site. She had already passed away by the time I heard about her.

I spent the better part of a night watching the video of the memorial service for her. And crying. It was called “A Celebration of Love”, and that’s exactly what it was. If love could save lives, she would still be here, for she gave and received so much love in her short life. I didn’t know this person, but I felt like I did.

We can certainly learn lessons from this, and many of us with illness – especially those who have a pre-illness life – will agree that we live life differently now, because we are aware that time is short, finite, and uncertain. We have to be thankful for everyday we have, and all that we are able to experience with the time we have.

It makes me feel overwhelmed that I need to do something about this, that young people don’t keep getting taken away from us far too soon. In my own experience, I’ve seen this a few times, and it’s a few too many. Parents should not have to bury children.

Eva’s message was all about love. And she lived by the quote, “The greatest thing you’ll ever learn is just to love and be loved in return.” And not just romantic love. But also the love of family and friends.

My boyfriend’s grandfather passed away this week. Right now we are in New Jersey. I know that ugly family disputes can sometimes occur in these kinds of situations, but in this case, all that is left is love – the love that the surviving family has, and the love that the deceased person had for them.

My boyfriend’s brother is a Rabbi, and delivered a beautiful eulogy. It made me feel like I had known his grandfather personally, even though I unfortunately never got the chance to meet him.

And as the date grows closer to celebrate the Bar Mitzvah of one of the children of my cousin who passed away last year, I find myself thinking about him. And I think of my cousin often. I have a picture of him on a dresser in my bedroom. I have not been to his gravesite. I will go at some point. Sometimes it’s hard to move on for reasons that are unknown.

As my cousin grew closer to death, he lost his faculties, and I believe, a core part of who he was, was lost along the way. I won’t speculate further, because I wasn’t privy to his last few months, but I know that it wasn’t a beautiful, celebratory experience. It was horrific, and no one should ever have to go through it.

So how do we make sense of the unfairness of life? How do we comprehend such bright lights being taken away from us? How do we attempt to live by example when they are no longer physically present to guide us?

And why do some of us find the need to make public something that is considered to be very private? This is not everyone’s cross to bear. Talking candidly about illness, death, and core beliefs is not something that everyone feels the need to share.

I recently finished reading “Promise Me” by Nancy G. Brinker, founder of the Susan G. Komen Foundation. Before Susan died, she implored Nancy to help other women with breast cancer. Nancy made a promise. It’s a true testament to sister’s love. (I won’t voice my qualms with the foundation here)

And that’s what I keep coming back to. Love…love…love...

If illness has taught me anything, it’s to live life out loud, to not hold anything back, because you never know what tomorrow is going to bring.

And I’m in love, more than I ever thought was possible. It is truly such an amazing gift.

In the end, love is all there is. Love given and love received. Pure, unadulterated love that isn’t apologized for or couched in lame platitudes.

I’m sure it’s different for someone who has been dealing with illness for their entire life, as opposed to someone who gets sick at some other time. But it doesn’t make losing them any easier.

I think the reason why these cases of young people getting sick and dying, like Randy Pausch (who I blogged about, and whose death touched me deeply despite the fact that I didn’t know him personally), captivate us because we secretly hope for the happy ending. We hope that a cure will be found or an organ will be procured before it is too late. Lately, I feel myself immersed in these kinds of stories.

And I have to wonder…

Did Eva get her happy ending? I sincerely hope she did.

Guest Blogger: Toni Bernhard

Several days ago, I finished reading the book, “How to be Sick” by Toni Bernhard. I thoroughly enjoyed the book, and am excited today to have Toni as a guest blogger on Getting Closer to Myself, as part of her virtual book tour. How did you get sick?

TB: I fell ill on a trip to Paris in 2001 with what the doctors initially thought was an acute viral infection, but I never recovered. After six months, I was given the diagnosis of ME/CFS (Myalgic Encephomyalitis/Chronic Fatigue Syndrome), although since that time, several other acronyms have been used to describe my illness, such as VICD (Viral Induced Central Nervous System Dysfunction) – a working theory of an Infectious Disease doctor from Stanford.

How did you come to write the book?

TB: I was completely unprepared for such a drastic change in my life. I was a law professor. I liked to travel to see my family. I liked to go on meditation retreats. I was active in the life of a young boy as his CASA (Court-Appointed Special Advocate). Suddenly, I couldn’t do any of those things. Despite years of Buddhist practice before I got sick, I fell into alternating states of denial, anger, self-blame, and even despair. We live in a culture that worships at the altar of wellness. It’s okay to get sick, but then you’re supposed to get better. Everyone expected that of me and I expected that of myself. Every night I went to bed expecting to wake up feeling like my old self even though for months and then years it had not been the case. So, in addition to my physical suffering, I was suffering a lot in the mind. It took 5-6 years to find my way back to the Buddha’s teachings on suffering and to the many practices that can help alleviate these painful thoughts and emotions. Once I began to change my relationship to chronic illness, I wanted to share it with others, so I wrote the book. The book is not about my particular illness. It’s intended for anyone suffering from a chronic illness or condition.

How has Buddhism helped you cope with chronic illness?

TB: First, it’s helped me understand my suffering. Second, it’s helped me to work with the stressful thoughts and painful emotions that accompany chronic illness and chronic pain. I think of the Buddha the way the Dalai Lama does – as a great psychologist. He had a keen understanding of how the mind works. Everyone’s life has its unique mixture of joy and suffering. The Buddha focused on suffering because it’s a truth about life that we tend to ignore or turn away from. It comes from the Pali word, dukkha which really means dissatisfaction with the circumstances of our life. In the first noble truth, the Buddha simply stated that, despite our best efforts to avoid it, everyone has their share of dukkha – both physical and mental – meaning we’re all dissatisfied in some way with our life. For one thing, we’re in bodies and bodies get injured and sick and old. Dukkha for me has included this illness. For others it could be frustration on the job, tension in a relationship, a bad living situation, even frustration over not being able to find your car keys!

It may sound counterintuitive, but when I started to really take in this first noble truth, I felt a great sense of relief. Finally, someone was describing life in a way that fit a good portion of my experience. What a relief to know it wasn’t just me or just my life!

So, we’re all dissatisfied with some of the circumstances of our life – unless we’re enlightened, of course! In fact, that’s my own personal definition of enlightenment: not being dissatisfied with the circumstances of my life. Just imagine for a moment not being dissatisfied in any way with how your life is going – opening your heart and mind to the unpleasant stuff too; just giving up all longing for your life to be other than it is. Just for a moment, drop all that craving, all that desire. It’s a relief, isn’t it? Those “wants/don’t wants” (as I like to refer to longing or craving) will almost immediately pop back into your mind, but it’s a taste of freedom, a taste that lingers.

The bottom line is: We have the life we’ve got – with its unique configuration of joy and suffering. We can’t always get rid of bodily suffering – the Buddha experienced great bodily pain at times. But we need not add mental suffering to that bodily suffering. We can do something about painful emotions, such as worry, fear, anger, resentment. We can do something about this constant craving for things to be other than they are in our lives. We can do something about stressful thoughts that, when left unquestioned, can lead us to spin elaborate stories we tell ourselves about our life and our future – stories that have little basis in reality.

How does the book address this mental suffering?

TB: That’s the heart of the book – specific practices that help loosen the tight-fisted grip that painful mental states have on us. One way to do this is to bring them to awareness (sometimes called mindfulness), to expose them to the light where we can see them for what they really are – impermanent for one thing (thank goodness), and also not inherently a fixed part of our identity. We are not just our pain. We are not just our illness.

The book contains several practices, some Buddhist some not, that help us question the validity of our stressful thoughts – those stories we spin about our lives – that have little basis in fact (“I’ve ruined my partner’s life,” “My friends don’t care about me.”). I’ve been helped tremendously here by Byron Katie’s technique for questioning the validity of our thoughts (there’s a chapter in the book devoted to her work) and also by a couple of Zen practices that keep me questioning my assumptions. “Am I Sure?” I’m always asking (thanks to Thich Naht Hanh). Am I sure the doctor I saw doesn’t care about me? Maybe he’s terribly overbooked today. Am I sure my friend has lost interest in me? Maybe she has problems of her own.

And the book contains many practices to help loosen the grip of painful emotions. Since emotions manifest in the body, this can even help alleviate our physical symptoms. One way to loosen their grip is to consciously cultivate calm and gentle mind states such as loving-kindness, compassion (both of these for ourselves first), and equanimity.

Some Buddhist scholars even equate equanimity with enlightenment, saying that if we can be calmly present with both our pleasant and unpleasant experiences, riding the waves of life’s ups and downs without the constant craving for things to be other than they are, we’ll know complete peace. And then, as the Thai forest monk, Ajahn Chah liked to say: “Our troubles with the world will have come to an end.” (On this score, I’m a work in progress!)

What challenges do you specifically address in the book?

TB: Whether chronically ill or otherwise disabled, we face so many sudden and unexpected challenges. Here are some I talk about in the book: coping with the relentlessness of symptoms and with the disappointment of failed treatments; learning not to blame ourselves for being sick; overcoming fear about the future; coming to terms with a life of relative isolation; handling being misunderstood or ignored by family or friends; dealing with cursory or dismissive treatment from doctors or other medical people; and, for a spouse, partner, or other caregiver, adapting to so many unexpected life changes.

Do you have to be a Buddhist to benefit from the book? (I’m not, and know very little about Buddhism, but still found the book to be quite helpful – especially as a young person trying to make sense of illness)

TB: No. The book is non-parochial. Many people, and I’m one of them, don’t consider Buddhism to be a religion in the traditional sense. It’s a practical path; it’s about how to live life day-to-day. The practices in the book will work for anyone, even for (as some reviewers have pointed out) people who are in good health!

In 1982, Toni received a J.D. from the School of Law at the University of California, Davis, and immediately joined the faculty where she stayed until chronic illness forced her to retire. During her 22 years on the faculty, she served for six years as dean of students. In 1992, she began to study and practice Buddhism. Before becoming ill, she attended many meditation retreats and led a meditation group in Davis with her husband. She lives in Davis with her husband, Tony, and their dog, Rusty.

Thanks, Toni, for sharing your story and book with us! And thanks for letting Getting Closer to Myself be a part of your virtual book tour. I’ve enjoyed having you here today!  And by the way, I love the butterfly on the book cover!

Toni can be found online at www.howtobesick.com. And feel free to leave comments for Toni here, at Getting Closer to Myself; she promises to check back often!

Same Stuff, Different Day: Unfortunate Lessons In Disclosure

Where was I during Invisible Illness Week? I was, well, invisible. I’ve had two feet firmly planted in dissertation reading land, and have been busy with that. But now I’m back in blogging and chronic illness land, albeit with two feet still firmly planted in dissertation land, and I am, needless to say, royally pissed.

For the second time in a month, I am being told that I need to get my doctor’s permission before I’m allowed to do something that I want to (and can) do.

I am interested in going on a group trip abroad. After disclosing my chronic illnesses, I was told that my doctor would have to approve. The form is written in such a way that I’m not sure any doctor would sign off on it. It makes the trip sound absolutely ridiculous. Observe:

- “11-17 hour flight depending on departure point”
- “Demanding agenda which includes early wake up calls, long days traveling, and late evenings socializing”
- “Walking tours that can last several hours on hard pavement”
- “Crawling underground, sometimes in confined caves…”

Wow, don’t they make it sound so appealing? Would my doctor approve of this, the way they make it sound? Would yours? Sounds more like the Olympics abroad, rather than a tour.

And I’m planning on training to walk a half marathon next year with my aunt. Part of my reasoning of wanting to do personal training (not physical therapy) was trying to get my body in shape to train. And when I do this, which I will, I’ll do it in the name of lupus and rheumatoid arthritis. They didn’t stop me from doing it, they fueled the fire.

I was told that in the name of “liability and safety,” I would have to have my doctor sign off. But quite honestly, it’s not really any of my doctor’s business. I don’t need his permission to do anything. I explained that I am allowed to do any kind of exercise that I feel I am able to do. But clearly, my opinion, the opinion of the person who is going to be paying for services, really has no say in this matter.

I was also told that the package I was going to sign up for tends to be “challenging” and that maybe I should pick something else. Shouldn’t I be the judge of that? Or at the very least, shouldn’t you meet with me in person and see my ability level?

Do I really want to train at a place like this?

In both cases, I felt like my illness status was pertinent information. And I honestly believed that it would make things easier to be up front about them. But instead, rather than making things easier, I am being hit with road blocks.

The reason I mentioned my illnesses in the first place is that they obviously impact my fitness goals, and I wanted to know whether I could opt out of activities on the trip abroad if I happen not to feel well.

But please, let me be the decision maker. Make me sign a consent form waiving liability. I won’t hold you liable for letting me do what I want to do, as long as you don’t hold me liable for my illnesses.

And how dare someone say that I am a “liability” because I’m sick. My illnesses are only a liability for me. Healthy people need to get over themselves!

These experiences make me feel like getting sick was my fault, and that my goal in life is to inconvenience people. I’m seen as a liability, a “thing” needing “risk management” and “risk reduction.” Some people certainly know how to make a girl, albeit a chronically ill one, feel special.

The form for personal training also spouts this nicety: “We recognize that you are eager to start your fitness program, and we sincerely regret any inconvenience that this may cause you.”

Honestly, I highly doubt that, because if they really were sincere, they wouldn’t make me feel like this to begin with.

The reason the University of Michigan made changes to the football stadium in terms of handicap accessibility wasn’t because they were so concerned about being inclusive and non-discriminatory. They didn’t want to get sued. That was the bottom line.

In other words, I am in an environment that is clearly not inclusive, and where the bottom line matters a whole lot more than pretty much anything else.

But then I think back to many of the experiences of disclosure that I’ve had, and many of them have been profoundly negative. So really, this is nothing new. This is just another page out of the chronic illness book.

And this just goes to show that sometimes it is better to not look sick and not say anything about it. These experiences are begging me to be dishonest. Well, it’s more like conveniently leaving out information than lying about it. So I guess from now on, my policy is going to be something of “Don’t ask, don’t tell.” I don’t think there’s anywhere that says I’m legally required to disclose my illness status. And from now on, I probably won’t.

It’s one thing if I make decisions to do or not do things because I’m sick, but people telling me no only makes me want to do it more

I just became a candidate for my PhD and have earned my Master’s degree, all while chronically ill. So while these experiences are hurtful, and border on discrimination, I’m not going to let other people who have no idea what my life is like, stand in my way.

So I’m calling a spade a spade. No one is going to tell me what I am and am not capable of. It’s ridiculous for someone to even think that by virtue of knowing what illnesses I have, that they therefore know anything and everything about me.

*** Postscript (9/28/2010) ***

As I suspected, my rheumatologist submitted the form for personal training and didn’t put down any restrictions. The personal training people still maintain that they do not think it is a good idea for me to sign up for the package I was originally interested in. I’m still trying to decide if I really want to train with these people…

*** Post-Postscript (10/1/2010) ***

I ended up signing up for three personal training sessions.  I wore my "Walk for Lupus Now" shirt to the session...

Is Being Chronically Ill Heretical?

(I don't talk about religion often, so humor me...)

Since my boyfriend is more religious than I am, I have probably taken part in more religious activities in the last six months than I did in the past few years, combined. This is mainly because, with illness, came a crisis in faith. I questioned a lot about my religion, and I still do, but I am trying to remain open-minded and take part.

However, I do feel that being chronically puts me at odds with my religion.

For instance, I don’t usually fast given that I have to take my medication with food. And when you look beyond the major holidays, there are a lot of fast days in Judaism.

Another example was at a service I went to several months ago with my boyfriend. He had told me ahead of time that many people sit on the floor during a certain portion of the service as a sign of mourning. In my head, I figured that I would stay seated in a chair because of my hip. I knew that getting down would be okay, but getting back up would not be so easy.

Men and women sit separately from one another, separated by a cloth and wood barrier. Through the barrier, I could see that there were a few men, of various ages, still sitting in chairs. But as I looked around my section, all of the women were sitting on the floor. I followed suit because I did not really want to have to deal with the judgment that I know would ensue. And I don’t know any of these people well enough that I would give them details of my medical history to explain why I stayed in a seat.

While Judaism dictates that you shouldn’t follow ritual at the expense of your health, that doesn’t mean that the people around you won’t judge you because of a perceived lack of observance or religiosity.

So does my being sick go against my religion? Of course, not literally. But in the figurative sense, it seems to me that from a public standpoint, my being sick limits me in a way that makes me appear less observant. But it’s not even a fact of observance. I feel like it makes me seem like I don’t care, like I’m somehow anti-religion. Like I’m thumbing my nose at ritual and tradition.

And that is not the case. One of the reasons I had stopped attending religious services when I got sick was because I felt my heart wasn’t in it, that my observance was disingenuous, and I didn’t like that feeling. So now, when I go, I try and put as much as I can into it. But I don’t want to develop social anxiety, and worry every time I go to services that someone is judging me. I know that in reality, I am less religious than most of the people that attend this particular branch of services. But I always dress appropriately, and participate to the fullest extent possible. I guess what I’m trying to say is that I’m doing the best I can.

And maybe I’m wrong. Maybe these people wouldn’t even have batted an eye if I would have stayed seated. But it put me in a very awkward position (no pun intended). I ended up sitting on the floor for about 45 minutes. And the next day, I was pretty stiff and in pain.

This situation has been eating at me, I think mainly because the judgment that I so worry about is really what goes against religion, rather than whether I stay seated or not. We are supposed to be able to be compassionate, not judgmental, and able to put ourselves in other peoples’ shoes. And yet, I can only imagine what that group of women must have thought, if I would have kept my butt firmly planted in my chair. I’m sure that they would never in a million years have considered that the reason is because I’m chronically ill and have a bad hip, amongst other things.

Maybe some people will say that the judgments of others don’t matter, regardless of what they are. And that as long as I’m doing my best, that’s what counts. But it’s hard to erase the possibilities from my mind.

And here’s another example, just to prove that this isn’t my personal problem with my religion. What about someone who has Celiac’s Disease (gluten intolerance)? What if they want to keep Kosher, but the products they have to buy, aren’t Kosher, as I suspect many of them aren’t? Certainly, from a religious point of view, I don’t think anyone would suggest that they should risk all kinds of medical complications by eating a regular diet, albeit a Kosher one. But I can imagine that they would get a lot of flack for this from the people around them.

I guess the issue really at play here is tolerance. No matter how together we try and make ourselves seem, there are always going to be people who see our illnesses as character flaws, making us seem less reliable, less together, and even less religious.

Personally, I try not to judge people based on their religious predilections, mainly because mine have been evolving. I went to Hebrew “Sunday” school from kindergarten through my senior year of high school. While I lived under my parents’ roof, I observed all major Jewish holidays. College was a time of questioning in that I didn’t feel like I fit in particularly well with any of the religious groups, although I was quite involved with culturally Jewish classes and activities. And in grad school, my health led me to a place that provided the opportunity for me to question a lot of the tenets of my life, not just religious ones.

I’m sure some people would say that I should let the judgers judge and look the other way, that if I’m observing the way my heart tells me to, that should be that.

At one point last year, I even enlisted the advice of the sister of one of my good friends, who is a Rabbi. I wanted to know what my religion said about young people getting sick, or all of the other bad things that can happen in life, that seem to defy explanation. We didn’t speak about the judgment of others, but we talked about the anger that I felt toward G-d and myself, and that maybe this source of conflict would be a way to re-engage with my religion.

And it’s interesting now to be at a place where I have begun to re-engage with religion, only to find that what I sought to get away from, is exactly what I am experiencing. Places of worship are not courts of law. I feel like they should be the one place where judgment takes a back seat. And I believe that spiritually, it does, but realistically, where there are human beings, there will always be judgment.

Don’t get me wrong. I’m not saying that rules are meant to be broken. But some of us have very real aspects of our lives that keep us from being “observant” in the traditional ways.

This year, our Rabbi, who is new, made an announcement, saying that he didn’t want there to be any heroes in the name of fasting. He said that if you have medical reasons for eating and not fasting, that you should by all means follow those. I’ve never actually heard a Rabbi say this before. I really appreciated it, even though I did end up fasting.

I guess maybe what I’m trying to say here is that what I love and most appreciate about my religion is the personal meaning that I get from it. And I guess I just wish that there weren’t core parts of me that make me feel like I can’t reconcile these differences.

Here are some questions to ponder: How do you view your religion in relation to chronic illness? How has your observance been impacted by being chronically ill?

Invisible Illness Awareness Week 2010

In honor, and in anticipation, of Invisible Illness Awareness Week (http://www.invisibleillnessweek.com/), which is September 13 to September 19, 2010, Maria of My Life Works Today and I are collaborating on a project.

So many of us have invisible illnesses, so our goal with this project is to make the invisible visible.

So what are you waiting for? Grab a paper bag, get creative, and show us your pics. Submit pics to gettingclosertomyself@gmail.com and mylifeworkstoday@gmail.com, and/or post on your own blog and share the link with us.

A few things to keep in mind:

- NO plastic bags. Paper ONLY.

- We know that many of you, including ourselves, may have more illnesses than fit on the paper bag, so put whatever feels most salient for you. This isn’t a competition. It’s simply a chance to get creative and take a stand against the invisibility of invisible illnesses.

Check out my blog and Maria’s (http://mylifeworkstoday.com/) for examples.

The inspiration for this project was taken from various website sources on the late Saul Steinberg’s work from the 1950’s and 1960’s (http://www.saulsteinbergfoundation.org/).

You can find more of his work at the Inge Morath Foundation, Martha Stewart's website, and/or by simply searching Google images.

“I Love You, Don’t Touch Me”

“Oh what the hell she says

I just can’t win for losing

And she lays back down

Man there’s so many times
I don’t know what I’m doin’

Like I don't know now […]

And I don’t know what I’m supposed to do

But if she feels bad then I do too

So I let her be […]

And she says oooh

I can’t take no more

Her tears like diamonds on the floor

And her diamonds bring me down

Cuz I can’t help her now[…]”

- “Her Diamonds”, Rob Thomas

He wakes me up gently. I roll over so my face is buried in the pillow. He lifts up my shirt and gently rubs the ointment on my back. He pulls my shirt down and I turn back over. He wishes me “Happy Birthday” and kisses me.

Such tender moments in my relationship with my boyfriend make me think that there will never be misunderstandings, that such minor maintenance will prepare us for the potentially tough times that could lay ahead. But I know the fatigue – one of the peskiest and least understood symptoms – is something that baffles him as much as it baffles me.

Why, after working 30 hours straight to my four or six or eight, am I totally exhausted and he’s not?

But there are also things I don’t understand about him. I can’t imagine how it feels to be a doctor and lose a patient. And I want to be there for him, but I don’t know how.

So in some ways, we are even. It’s hard to watch someone you love suffer. But sometimes there is no choice, because there’s nothing in your power you can do to help the other person but be present.

You can empathize 98%, but there are some things that can’t be taught or learned. I can explain symptoms in ways to try and make him, or anyone else, understand, but at the end of the day, I’m the one who has lupus and rheumatoid arthritis, and only I know 100% how that feels; just as only he knows how it feels to take care of a patient, only to have them die.

Life is a funny thing, as it only prepares us so much for our own hand, so to try to begin to understand someone else’s is a feat in and of itself.

My boyfriend told me several months ago that he had read my blog. He told me that he cried, had to walk away a few times, and that there were so many times he wanted to call me in the middle of the night to talk about things I had written. He said that because he’s a doctor, he knew what lupus was, but he could never have imagined what it meant for my life. He told me that I’m one of the strongest people he knows, and stronger than anyone should ever have to be.

So mostly, there is just love. And the act of being in the same room together is enough. Because there are times when I just want to say, “I love you, Don’t touch me.” Even though that kind of feels akin to “It’s not you, it’s me,” it’s true. There are times when I’m in pain, and the slightest touch will make me wince, or I’m so exhausted that the thought of expending any kind of energy at all is unfathomable. There are times when love has to be enough because that’s all either of us can provide in that moment, because we are ill-equipped to deal with the other person’s suffering.

Never, in my darkest moments over the past few years, could I have ever imagined that I would meet someone like this, someone who sees me for me, beyond illness, and who is willing to stand by me, no matter what.

Because when you get sick, you think that you’re never going to find anyone to love you. And then you meet that guy. And you love him, and he loves you. And honestly, every time I think really hard about this, I cry. Because I’m so happy, and I can’t imagine what my life would be like without him. Because even the worst days are made just a little bit easier because he’s there.

Patients For A Moment: What Advice Would You Give Edition

Welcome to the latest edition of the patient-centered blog carnival, Patients For A Moment. The posts submitted for this edition were based on the following question I posed to readers:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

*****

These 10 gems of wisdom have taken several different forms, from letter to list, and all provide a great amount of insight into what it means to deal with chronic illness in a world that isn’t always sympathetic or understanding:

Kathy, at Making Noises, provides an honest and heartfelt list about what she would like the people in her life to understand, in the post, Ten Things I Want You To Know.

Selena over at Oh My Aches And Pains! explains the meaning of chronic, suggesting that being chronically ill “is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits,” in the post, Selena Writes: A Letter to the Healthy People In My Life.

Maria from My Life Works Today shares a story outside of illness, in which her ability to understand someone else’s situation is questioned. She connects this story to illness, in the post, So Much to Learn - So Little Time. I can’t do adequate justice to the post here, so just read it! Suffice it to say, she’s got moxy!

In the post, What I'd Say, Brittney from The Road I'm On, shares what she would tell her new classmates about her life with chronic illness, if she could sit them all down at once.

Lisa Emrich of Brass and Ivory “thinks aloud” about what she would like non-chronically ill people to know. While she says she doesn’t think about this group often, she shares what having multiple sclerosis and rheumatoid arthritis mean for her life, in the post, I am still me.

Novel Patient Lauren emphasizes the importance of finding balance and not trying to “one up” each other when it comes to talking about pain and illness, in the post, Complaining About Complaining. 

Rheumatoid Arthritis Warrior Kelly Young shares one man’s experience learning to deal with the impact of his wife’s RA in the post, Living with a Spouse with Chronic Illness, part 2.

From the blog Chronically Young, Britta takes us through many of her symptoms from Lyme Disease, and wishes that others understood how good they actually have it, in the post, What I'd Say.

In the post Awareness...or something like it!, Shweta of it's no more in my head, talks about the importance of being sensitive to the situations of others.

From the blog, Frank Living Fully, Frank Elliot shares a brief story about others being helpful, in the post, Living With Hope In A Community of Hope.

*****

I am still in need of hosts for the October 27th, November 10th, and November 24th editions – and all 2011 editions (I know, it’s weird to be thinking ahead to 2011 already). My goal for 2011 is to have each edition hosted by a different person. Please contact me at gettingclosertomyself@gmail.com if you are interested!

And I didn’t get a chance to finish the post I was working on for this edition of PFAM, but check back on my blog next week for the post, “I Love You, Don’t Touch Me”, which touches on several of the issues explored here.

The next edition of PFAM will be hosted by Dear Thyroid on September 8, 2010.

Everyone is doing a great job so far!

“Patients For A Moment” Is Here August 25th

I’ll be hosting (again) “Patients For A Moment” on August 25th.

Here is my question for this edition, which your posts should be related to:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

Being chronically ill can be really frustrating because of the lack of understanding from those around us. On the flip side, I think sometimes we forget that not everyone is chronically ill.

In other words:

Those who can’t do, teach. Those who aren’t ill…You fill in the blank.

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, August 22nd.

A Good Nurse Knows A Prick When She Sees One (And Some Nurses Are Just Pricks)

I try not to take myself too seriously. And I try to focus on the funny, silly, ridiculous experiences that come with being chronically ill, rather than the horrible ones, although sometimes they are hard to ignore. Sometimes, however, we just have to laugh at the funny parts, which brings me to this post.

I’d say that one of the most up and down experiences you can have as a chronically ill person is getting blood drawn. I have to get monthly blood draws to make sure that Methotrexate isn’t getting my immune system too down, and also to make sure it’s not negatively impacting my liver. Aside from this, I have to get blood drawn for appointments, tests, and occasionally, research. If the person knows what they’re doing and hit the right spot, no problem. But if they don’t, it can literally and figuratively be a major pain. So this is to say that I have had, and will continue to have, a lot of experience in the blood drawing department.

In my opinion, a really good nurse will be able to tell if you’ve been poked recently, and sometimes they’ll even be able to spot their own work, or definitely know that they didn’t prick you like that or leave a bruise. So imagine that in a one-week period, I was stuck seven different times. I guess I’m no one poke wonder…

I know that I’m not an “easy stick”. This is something I’ve come to accept. When I go for blood draws and they ask which arm they should use, I hold both arms out and say, “Pick your poison”. Most of my veins are superficial and blow easily. And I’m a small person, so naturally, I have small veins. I’m lucky if they get two tubes out of one stick. I’m a veritable pin cushion.

It’s also weird when nurses and techs say things that are on the list of things you don’t say to a patient. For instance, one nurse, after administering my EKG, asked when I would be seeing my doctor again. Like when are you seeing your doctor, because you need to.

Then another asked what I do for work. But she didn’t phrase it that way. She asked if I’m capable of working. Why, because I told you I have lupus? Or because you see something going on with my heart, on my ECHO, and you can’t imagine how I walked myself in here, let alone get out of bed every day in an attempt to be a productive member of society?

Finally, another nurse says to me, “You look so familiar”. And in my head, I’m thinking, I’m laying here with my boobs hanging out of this gown, with ultrasound goop all over me, and an arm which is about to be shot up with agitated saline. But hey, I get that ALL the time.

And let’s talk about the “agitated saline” for a second. Basically, they inject microscopic air bubbles into your arm, and then they inject saline. This provides contrast and identifies any holes that may be in your heart. It’s not as bad as it sounds, except when the nurse misses the vein and has to stick twice. All the while, I’m thinking that I’m agitated enough as it is, I don’t need agitation flowing freely through my veins.

It’s not just what they say, but how they say it. And one of the reasons I’ve stuck with the doctors that are currently on my medical team is because none of them are alarmists. And that’s what I need. I don’t need someone who is going to make me nervous by saying or doing stupid things.

So why is it, that as patients, we feel compelled to apologize for being hard sticks or for asking too many questions? Why don’t nurses ever feel compelled to apologize for their tactless behavior?

Today, I went for my monthly blood draw. The phlebotomist asked me my birthday and I said, “8-11-85”. She said, “Happy birthday”. I said, “Thanks, it’s tomorrow”. She proceeded to argue with me, “It’s today”, and I said, “No, it’s tomorrow”. The tech next to her said, “How much longer are you going to argue with her? Today’s the 10th”. And then the other tech said to me, “Are you really sure you want her to draw your blood?”

That’s exactly my question…

When you’re chronically ill, blood draws become routine very quickly. But, seriously. As patients, we allow these people to have way more power in our lives than they deserve. And lab techs simply see us as things to prick. Because we see them for such a short time. They don’t see the person behind the needle, the human instead of the disease.

These experiences are frustrating, although it is pretty humorous that someone argued with me about when my birthday is. After all, I should know, right?

So I have to wonder: when we stick out our arms, are we sticking out a whole lot more than that?

Give And Let Give

“You can’t know how you would behave in a crisis until it drops out of the sky and knocks you down like a bandit: stealing your future, robbing you of your dreams, and mocking anything that resembles certainty. Sudden tragic events and even slow-burning disasters teach us more about ourselves than most of us care to know” (7).

- Lee Woodruff, “In An Instant”

*****

As I mentioned at the start of the summer, I have been doing some volunteer work at a local hospital. I really want to talk about the experience, but I am going to keep this sort of general and vague, in order not to violate the privacy of anyone involved.

That said, I have been truly amazed by this experience so far. For me, I wanted to do something fulfilling (and outside of academia), and I also wanted to try and make the hospital a less imposing place for me to be. I didn’t want all of my hospital experiences to be as a patient, to be only on the side of the vulnerable and helpless.

And I’ve seen it now, from the other side. Patients’ families have their own private clubs. It’s like the way it used to be at the airport. They step off of the elevator and run into each others arms. They share in each others joy and sorrow. They celebrate progress made, organs procured. And they mourn losses and setbacks. And they do this together.

I know from my experience as a patient, it is worse to be a family member; watching, waiting, hoping, praying. And to see how these families persevere, given great odds and uncertainty, is truly amazing to me. You’re never quite as alone as you may feel that you are.

I’ve also seen patients come back to visit nurses, to show their appreciation. Patients that were on the brink of death. And I’ve seen nurses smile such large smiles, a combination of pride and admiration, a side so rarely seen. And this is what it’s about. It’s not about what happens in the open, when doctors come to tell families how surgery went. It’s about the moments that happen behind closed doors; the moments when doctor, patient, family, nurse, and all others involved become one, coming together to make sure that the patient gets the best possible care and treatment.

Having seen it on all sides, it’s not easy, no matter which way you look. But it is possible. It is possible that all parties involved will have one common goal; to see the patient through this medical crisis. Despite the minimal information provided, I will say that in the unit I volunteer in, the patients are critically ill.   And I feel lucky that, given my own improvement in health, I am able to donate some of my time to others.

There are multiple sides to every story. What keeps me going is knowing that illness isn’t easy for anyone involved. It’s a journey, a constant evolution of learning and education. And because illness can be isolating, I think we sometimes forget that it isn’t just about us. It is also about our doctors, who try to help and heal us, our family and friends who try to support us, and even those naysayers, who try to make us feel like we are less human because we are sick. The patient experience is informed by all of these entities. And I’m not sure I would have been able to really see that if I hadn’t viewed things from the other side.

There are times in life when you do things, regardless of what may or may not come from such experiences.  Sometimes, in order to get, you have to be willing first to give.  Such is the case with my volunteering. I didn’t go in necessarily expecting to get something in return, and yet, I have. I have enjoyed this foray into the other side of things, viewing the chronic illness experience for perspectives other than that of the patient. And I think this experience has made me appreciate just a little bit more all of the people that are a part of my team, who help me live the best I can with lupus and rheumatoid arthritis.

*****

[…] I’ve looked at life from both sides now,

From win and lose, and still somehow

It’s life’s illusions I recall.

I really don’t know life at all”

- Joni Mitchell, “Both Sides Now”

“I’m Sick! Is That A Problem For You?”

For the upcoming edition of Patients For A Moment, Queen of Optimism asks:

What is the nicest thing (or things) anyone has done for you since you became ill?

My answer to that question is based on the following experience…

Recently, I got an e-mail with the phrase that is the title of this post as the subject line (although I’ve added punctuation for effect). I wasn’t exactly sure what to expect when I opened the e-mail. Such a statement could be taken two ways:

1. Someone is sick and wondering if it is okay for them to be around me

Or…

2. Healthy people often act as if the illnesses of others are an inconvenience to them

I have to say, the first option is one of the nicest things people can do, to make sure that it’s okay for me to be around them if they are feeling under the weather. My immune system is unpredictable, and there are times when I have been around someone acutely ill, and have gotten sick myself. Other times, I haven’t. So I really appreciate being given the opportunity to decide for myself, and to extricate either myself or the other person from the situation.

That said, depending on how I am feeling, it is kind of a toss of a coin. And it still makes it hard for me to tell someone that either they or I need to leave, or we have to reschedule or whatever. But when someone asks, truly from a place of care and concern, I am more prone to respond honestly. And that person is more likely to understand.

Not many people care this much to think about it, let alone to ask, so when someone does, I’m especially appreciative. Similarly, I find it particularly nice when someone gives me an out if there are plans, and they tell me not to feel obligated if I am not feeling well. I usually don’t take people up on this offer, but it is certainly nice to have an escape clause.

I think these things are so important to me because I am not likely to be inclined to take them upon myself. When I am not feeling well, I try to push through, no matter what. But that doesn’t always work to my benefit. In fact, it usually works to my detriment. So it’s nice when other people let me off the hook.

But as I suggested, this doesn’t happen often, and usually comes from people who are ill themselves. It’s funny how that works, right? That’s where the second meaning of the phrase, “I’m Sick! Is That A Problem For You?”, comes in.

So often, I have encountered people who have acted like my illnesses seek to inconvenience them. I have certainly seen this in higher education; with colleagues, professors, and administrators. It seems that the University is on the prowl, always concerned about how students want to evade requirements. In other words, their first concern is how the student is trying to play the system. Obviously, there are always dishonest people, but I would say that in the majority of cases, people are coming from a place that does not seek to harm the University, and is truly legitimate.

Sorry, that little bit of a rant may seem off-topic, but really, it’s not. It’s amazing how a single phrase can have two such divergent meanings. One version of this phrase comes from someone to the chronically person, and the other comes from the chronically ill person to other people. One has the chronically ill person in mind, while the other does not.

Granted, it’s a fine balance between acknowledging illness and not focusing solely on it. And it’s difficult for all sides involved. But to me, the nicest thing someone can do is be cognizant of a chronically ill person, and even if they are not ill themselves, try to understand, even just a little bit.

So the next time someone asks, “I’m Sick! Is That A Problem For You?”, I might just ask them the same question right on back. (And of course hope that the answer is “no” on both accounts)

Patients For A Moment: What Have You Done Edition

Welcome to the latest edition of the patient-centered blog carnival, Patients For A Moment. The posts submitted for this edition were based on the following question I posed to readers:

What have you done (or what do you aspire to do) in spite of illness?

So often we are told by various parties in our lives that we can’t or shouldn’t do things just because we are sick. What have you done in spite of illness? This includes victories big and small. Let’s celebrate all that we have accomplished!

*****

Brittney, from the blog The Road I’m On, talks about her ambition of becoming a doctor of veterinary medicine, and the doubts a new physician has about this given her illnesses, in the post, I Know What I Know and I’ll Decide Where to Go, where she sets the record straight. (I totally know how she feels!)

Laurie Edwards, from the blog A Chronic Dose, talks informatively about what it’s like to be chronically ill and pregnant in the post, A High-Risk Pregnancy By Trimester. (Let me just say, I am so happy for her!)

I usually don’t include myself when I host, but I figured since it fit the theme, I’d go with it. Like Laurie, I talk about pregnancy. I talk about the possibilities of getting pregnant, in my post, “Le Talk”.

Duncan Cross says that other people have attempted to limit him more than he has himself, only discover that staying involved in life is a key to keeping illness from taking over, in the post, What I’ve Done.

Selena of Oh My Aches and Pains!, shares the activities that she has taken up because of illness, and how much her life would be different without them, in the post, A Weird Thank You to the Universe.

In the post Today’s List, Tonja and her Service Dog Luka from Pink Doberman, tell us everything they need to get done. Tonja says that it might not seem like she has done much, but she is well on her way to tackling her list!

Barbara Kivowitz of In Sickness and In Health talks about Reclaiming the Joy in the face of illness.

Shweta of its no more in my head writes about the ups and downs (literally) of taking a dance class in the post revisiting my twisted moves....

And Rheumatoid Arthritis Warrior Kelly Young puts herself out there about misconceptions about rheumatoid arthritis in the post Woman’s Day Rheumatoid Arthritis Article: A Video Appeal.

*****

Please note, if you haven’t figured it out already, I am taking over running Patients For A Moment from Duncan Cross. You can now “like” PFAM on Facebook, and I’ve also created a blogger site for the blog carnival at http://patientsforamoment.blogspot.com/, which will now be where the carnival is run through.

I am in need of hosts for almost all upcoming editions, so please contact me at gettingclosertomyself@gmail.com if you are interested in hosting. A schedule and other information are all up on the blogger site.

A big thank you to those who have already volunteered to host!

And thanks to all who contributed posts for this edition! I hope you are all as inspired as I am by all that chronic illness bloggers have done!

The next edition of PFAM will be hosted by Queen of Optimism on July 28, 2010.

“Patients For A Moment” Is Here July 14th And More

I’ll be hosting the “Patients For A Moment” – a patient-centered blog carnival created by Duncan Cross – on July 14th.

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

What have you done (or what do you aspire to do) in spite of illness?

So often we are told by various parties in our lives that we can’t or shouldn’t do things just because we are sick. What have you done in spite of illness? This includes victories big and small. Let’s celebrate all that we have accomplished!

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, July 11th.

Also, please note that I am taking over running Patients For A Moment from Duncan Cross. You can now “like” PFAM on Facebook, and I’ve also created a blogger site for the blog carnival at http://patientsforamoment.blogspot.com/.

I am in need of hosts for all upcoming issues, so please contact me if you are interested in hosting.

“Le Talk”

There are always blog posts to be written. Things I want to write about, but can’t, don’t know how to, or simply don’t have time. I’ve wanted to write this post for a while and I’ve been waiting for this appointment – yesterday – with my rheum for a long time. I was excited to tell my rheum that I actually think I am having more good days than bad, and that while this is great, I suspect I may have some symptoms of Central Nervous System (CNS) Lupus, and that it’s time he and I had “the talk”.

“The talk,” you ask? What talk? The I want to have a baby someday in the not so distant future so please tell me what that will look like talk. Oh, that talk. Yeah…

I told myself I would not have this conversation until I was good and ready, until there would be someone else in the room with me who wanted to know the answer. To this point, neither my rheum nor I have given a whole lot of thought to my fertility. The greater concern has been getting my health to the most stable possible place.

The night before the appointment, I found myself getting oddly emotional. When I first got sick, I thought that my life was over. I really felt like I would never find someone to love me. So to be at the point where I’ve met someone and we’re making future plans, I never thought I’d be having this conversation with my rheum. And for that reason, it wasn’t really something I thought too much about before. Why? Because it wasn’t until illness, and the possibility of I can’t, that I really felt like saying I can and I want to. And it wasn’t until several months ago that I even had somebody in my life that I would consider the possibility with. But I really do believe that this current relationship is a forever thing.

I was given a print-out a few months ago that went through any possible interactions between my medications. Included with this was an explanation of whether the drugs can be used during pregnancy. It comes as no surprise that all of the drugs were either “contraindicated” with pregnancy or using “extreme caution” was suggested.

My main concern at this point is: will I be able to live without medication?

Our conversation wasn’t very long, and it was a bit awkward, but my rheum seems to have a fairly concrete plan for me, although he did not want to entertain what ifs. He said that many women with rheumatoid arthritis feel better during pregnancy. With lupus, he said, it’s a mixed bag. Some women have less disease activity, others get worse.

I was hoping there would be some trial period, like I could try going off meds now to see how I do, rather than waiting until it’s a necessity. But he didn’t seem to think that was such a good idea. So, I will have to get off of the methotrexate for six months and the plaquenil for three, before I can consider getting pregnant. And then prednisone will be the drug of choice. But I guess if I’m going to get fat and have food cravings anyway, bring on the prednisone.

And I’ll get a new member of my medical team – a high-risk obstetrician who will manage that side of things.

While I see now from other people, that even with illness, and however high risk, children are a possibility, it scares me. A lot. Will I be able to handle the emotional upheaval of trying and failing, and maybe ultimately, failing?

I can be very headstrong. And the more people tell me I can’t, the harder I try to prove them wrong. But in this case, that could be deadly. Will I be able to stop myself? Will I be able to hold in check my frustration, when my friends and their husbands have the joy of “trying” whenever they want, and I will have to calculate everything to the very last second?

I had always envisioned that when I really started to contemplate having children, it would be such an exciting conversation, not one filled completely with trepidation, fear, and anguish. And as chronic illness is so good at doing, I feel like time is compressed, like I have much less time to try and to succeed before the window of opportunity closes.

And there are also other reservations, some illness related, some not. Will I be a good mother? What if I’m in too much pain to hold my own child? How will I be able to take care of a child, when at times, I can’t take care of myself? With so much about lupus being unknown, do I want to bring a child into this world who may have the same fate as me? 5% of patients that have lupus will have babies with lupus. Will my future child (or children) be in that 5%? Because as many of you know, when given the choice, my body prefers to go the 2% route rather than the 98% route.

And the reality is that pregnancy has the potential to throw my body into a total tailspin. G-d knows lesser things have done worse. And I have to wonder. If my body mistakes things that are meant to be there as foreign invaders, what is it going to do with a baby? I know others have gone through this before me, but right now, it feels like I might as well be the very first person in the world with lupus to want to have a baby.

Most women, I think, feel like they can trust their bodies, until their body gives them a reason not to. I cannot trust mine. I cannot trust mine to support myself in the way that I need it to. So how do I trust such a body to support another living thing? You know, many women train for marathons. For me, I feel like I will have to train for having a baby. I’ll have to get my body in top shape, peak performance.

The idea of becoming a mother is almost seductive. The remission idea is incredibly interesting, and a bit seductive, too.

Here is an interesting article about the pathways that impact autoimmune diseases going into remission during pregnancy that my boyfriend brought to my attention.

But we can’t predict the future. So I guess for now, all I can do is try and attempt to get off the meds, try to live fully without them if I can, and rest in knowing that despite all of the unknowns, I know that I am with the person I want to have children with. And if it’s meant to be, I have to trust that the rest will fall into place.

So I guess this is only the beginning of this journey. It’s not like I’ll be having a baby tomorrow, but just as my readers have shared in everything else, I hope you’ll all stick around for this, too!