“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!