2010: My Year, In Books (And Other Remembrances)

“Five hundred twenty five thousand

six hundred minutes
Five hundred twenty five thousand

moments so dear

Five hundred twenty five thousand

six hundred minutes

How do you measure, measure a year”

First, I’ll start with the other remembrances, and then I will get to the books.

2010 was a year for many things:

The year of Methotrexate:

I chronicled my on again, off again love affair with the drug, in the posts:

- “The Sacrifices We Make To The Medication Gods”

- “A ‘Sick’ Day Or A ‘Typical’ Day?”

- “Running Out”

The year of Repeat Cellulitis:

- “Patient Knows Best”

The year of the Guest Blogger:

I was happy to host Sara Gorman, author of “Despite Lupus”, and Toni Bernhard, author of “How To Be Sick”:

- “Guest Blogger: Sara Gorman”

- “Guest Blogger: Toni Bernhard”

The year of the death of Support Groups:

Virtual support seems to be the beacon, as in-person support groups fizzled out:

- “Hello, Lupie!”

- “Two Years And Counting: The Insight That Comes From Illness”

- “Does Misery Really Love Company?”

The year of annoying and incompetent hospital staff and other “professionals”, and other mishaps:

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

- “Same Stuff, Different Day: Unfortunate Lessons In Disclosure”

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

The year of Volunteerism:

- “Give And Let Give”

The year of My Second Hospitalization:

- “Worse Date Night Ever (And It’s All My Fault)”

And most importantly…

The year of the Boyfriend, the year of the boyfriend, and oh yeah, did I mention, the year of the boyfriend?

We’ve been dating for nearly a year now, and I couldn’t be happier! I’ve blogged a lot where he’s concerned from disclosing to living to talking about babies and everything in between:

- “Breaking My Own Rules: The Doctor Is In The House”

- “When Your Body Calls, Who Responds?”

- ‘Le Talk’

- ‘I Love You, Don’t Touch Me’

He’s briefly mentioned in passing in many posts, so I’ll leave it to you to find them all.

*****

And now on to the books…

One of my goals for 2010 was to either read all of the books on my shelves that I haven’t read, or get rid of them. Maybe that sounds stupid. But part of my more abstract goals was to get rid of excess baggage, to get rid of the things that are holding me back and/or down.

I did not end up reading all the books on my shelf, but I did set a goal to read at least 50 books, and I surpassed that.

This list includes only books that I read in the entirety. This does not include the countless articles and book chapters that I read for my research. 

Reading all these books made me realize that I need to get on writing my own, because some of the stuff out there is just plain crap.

Maybe 2011 will be the year that I write a book!

Anyway, I think the books a person reads says a lot about them. And since I do truly spend so much of my time reading, here goes. You will notice that I do tend to get on author kicks. Hopefully from my list, you'll find something worth reading in the year to come:

1. “Lip Service” by Susan Mallery (F)

2. “Straight From the Hip” by Susan Mallery (F)

3. “Hot on her Heels” by Susan Mallery (F)

4. “The Pursuit of Perfection” by Sheila M. Rothman and David J. Rothman (NF)**

5. “Mistaken Identity” by Don & Susie Van Ryn and Newell, Colleen, and Whitney Cerak with Mark Tabb (NF)

6. “As Nature Made Him” by John Colapinto (NF)

7. “Dear John” by Nicholas Sparks (F)

8. “90 Minutes in Heaven” by Don Piper (NF)

9. “Despite Lupus” by Sara Gorman (NF)*

10. “How to Write a Lot” by Paul Silvia (NF)**

11. “The Art of Being a Healing Presence” by James E. Miller and Susan C. Cutshall (NF)*

12. “Time Management from the Inside Out” by Julie Morgenstern (NF)

13. “The Five People You Meet In Heaven” by Mitch Albom (F)

14. “For One More Day” by Mitch Albom (F)

15. “Have a Little Faith” by Mitch Albom (NF)

16. “Cancer Is a Bitch” by Gail Konop Baker (NF)*

17. “Messenger” by Jeni Stepanek (NF)*

18. “The 9th Judgment” by James Patterson (F)

19. “My Stroke of Insight” by Jill Bolte Taylor (NF)*

20. “Better” by Atul Gawande (NF)*

21. “The Immortal Life of Henrietta Lacks” by Rebecca Skloot (NF)* **

22. “Lift” by Kelly Corrigan (NF)

23. “The Short Book” by Zachary Kanin (NF)**

24. “In An Instant” by Lee & Bob Woodruff (NF)*

25. “The Middle Place” by Kelly Corrigan (NF)*

26. “Hornet Flight” by Ken Follett (F)

27. “Complications” by Atul Gawande (NF)*

28. “Private” by James Patterson (F)

29. “The Council of Dads” by Bruce Feiler (NF)*

30. “Short” by John Schwartz (NF)**

31. “Lupus Q & A” by Robert G. Lahita and Robert H. Phillips (NF)*

32. “As I Live and Breathe” by Jamie Weisman (NF)*

33. “The Woods” by Harlan Coben (F)

34. “The Postcard Killers” by James Patterson and Liza Marklund (F)

35. “The Innocent” by Harlan Coben (F)

36. “Julie's Story, My Life With Lupus” by Julie Miller (NF)*

37. “My (So-Called) Normal Life” by Erin Zammett (NF)*

38. “Love Story” by Erich Segal (F)

39. “The Biopolitics of Breast Cancer” by Maren Klawiter (NF)**

40. “Train Go Sorry” by Leah Hager Cohen (NF)**

41. “Deaf in America” by Carol Padden and Tom Humphries (NF)**

42. “Impure Science” by Steven Epstein (NF)**

43. ‘So What Are You Going To Do With That?’ by Susan Basalla and Maggie Debelius (NF)**

44. “Courtney’s Legacy” by George Cantor (NF; link not available)

45. “Better Than Well” by Carl Elliott (NF)**

46. “How to be Sick” by Toni Bernhard (NF)*

47. “Disarmed” by Kristin A. Goss (NF)**

48. “Flammable” by Javier Auyero and Débora Alexjandra Swistun (NF)**

49. “The Case Against Perfection” by Michael J. Sandel (NF)**

50. “Promise Me” by Nancy G. Brinker (NF)*

51. “Complete Your Dissertation or Thesis in Two Semesters or Less” by Evelyn Hunt Ogden (NF)**

52. “Normal At Any Cost” by Susan Cohen and Christine Cosgrove (NF)**

53. “Unstoppable in Stilettos” by Lauren Ruotolo (NF)

54. “Footprints of Courage” by Jan Jenkins (NF)

55. “Hoda” by Hoda Kotb (NF)*

56. “Someone Like You” by Susan Mallery (F)

57. “Falling for Gracie” by Susan Mallery (F)

58. “Into Thin Air” by Jon Krakauer (NF)

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers
** Academic books/books for my research

*****

Wishing all of my readers a very Happy New Year!

Be sure to check out my new blog/business venture: Creating Everlasting Memories (And More!).

And, of course, look for new posts in 2011!

Patients For A Moment: The Year In Review Edition

Welcome to the latest edition of the patient-centered blog carnival, Patients For A Moment. This is the last edition of 2010. Can you believe it? I can’t! Where did the time go?

For this edition, I asked readers to wax nostalgic, based on the following question I posed:

What is/are your favorite/best post(s) of 2010?

Participants had the option of submitting a post they wrote some time over the last year, or to come up with a summary piece of all of their writings from 2010.

*****

In the post, 2010 in Review: The Year of the Baby, Laurie Edwards of A Chronic Dose reflects on the past year of a high-risk pregnancy and the birth of her daughter. Laurie, we’re glad to have you back and so proud and happy of all that you have accomplished!

My Life Works Today's Maria Pfeifer anticipates her New Year’s resolution in exploring her relationship with illness, in the post, To Be, or Not To Be,.... She suggests that there is a delicate balance between illness being ignored and taking over our lives.

In the post, PFAM: 2010; the year in review, Phylor of Phylor's Blog, puts a positive spin on the past year. As she says at the end of the post, “2010 was a year of tears, but I chose to remember it best with a post of laughter.” Well said, Phylor!

Nessie, at Lipstick, perfume, and too many pills, shares the things she wishes someone had told her when she was newly diagnosed. Based on the positive response she received on the post, an open letter to you, confirmed her belief in the importance of patient blogs. I think we can all agree with that!

In one of her favorites of the year, Shweta, of the blog it's no more in my head, laments that “if diamonds are a girl’s best friend, shoes are her soul mate..... And not being able to wear nice shoes sucks so much.” Arthritis, she muses, can be such a drag, in the post, My Pretty Shoes Syndrome. Girl, I know exactly how you feel!

In Sickness and In Health's Barbara Kivowitz discusses a topic that is important for the illness experience of couples, although it is rarely talked about, in the post, The Guilt of Illness.

Kathy, of FibroDAZE, shares with us the post that she wrote for Invisible Illness Awareness Week 2010. By talking about everything she can do, helps her when she gets down about everything she can’t do, in the post, Yes I Can!.

From It's Time To Get Over How Fragile You Are, Andrea Martin shares the post, 11 Things My Life Does Not Need In 2011. She has some good ideas. What are some things your life doesn’t need in the year to come?

Rachel B, from Tales of Rachel, tackles her Fear factory. in a post about developing and overcoming her anxiety issues.

In the post, Pacemaker Activity Guidelines, Judith Westerfield, of the blog CreativitytotheMAX, faces her fear of getting a pacemaker by using blogging and humor to cope; and wrote the post, knowing that she had lived through the experience.

*****

Thanks to all of those included in this edition for sharing your best with us!

I’ve really enjoyed coordinating PFAM in 2010, and can’t wait for what’s in store for 2011!

Of course, 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 my year in review post.

And please be sure to check out the Patients For A Moment blog for updates and information.

The next edition of PFAM – and the first of the New Year – will be hosted by Glass of Win on January 12, 2011.

“Patients For A Moment” Is Here December 22nd

I’ll be hosting “Patients For A Moment” on December 22nd, and I’m starting a new tradition.

The theme for this edition is: The year in review. (I hope to do this every year!)

What is/are your favorite/best blog post(s) of 2010?

You can participate in one of two ways:

1. Provide me with all of the required submission information on a post that you wrote sometime between January 1st, 2010 and now

OR

2. Write a post in which you wax nostalgic about the posts you wrote over the last year – you can check out examples I’ve done for 2008 and 2009

In other words, you don’t actually have to come up with a special post for this edition, unless you want to.

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 also for this edition, tell me why it’s your favorite/best post, if you are selecting from previously written posts.

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, December 19th.

A Few Of My Favorite (Illness) Things…*

In my everyday life, here are a few “everyday” things that I can’t live without:

- Cloth bags – You know, the ones you can buy just about anywhere these days. I’m accumulating quite a collection of them. But they are great because I feel they balance weight better than traditional plastic or paper bags, I can shoulder them, rather than hold them in my arthritic hands, and as a bonus, they are good for the environment.

- Cell phone with keyboard – I don’t love to text, but since it happens, I got a cell phone that has a pull out full keyboard. It’s too hard on my fingers to try and text using numbers only.

- Rubber jar grips – What a simple thing, but absolutely necessary. I pretty much can’t open any jar without assistance due to my arthritis, so these are a must for me.

- Pill holder – I have several of these, ranging from single dose holders to the weekly calendar type with several compartments for each day. It’s too hard to keep track of all the meds I take any other way.

- Biofreeze® or Freeze-It® - Numbing jells, which can help my achy joints. I prefer the roll-on type, but there are several varieties.

- Ibuprofen – Enough said.

Since my second hospitalization several weeks ago, I’ve been trying to come up with a list of the things that I would want to keep in a pre-packed bag that I could easily grab and take with me for a hospital stay (of unknown duration):

- Slippers and/or socks

- A stockpile of meds

- Underwear

- Feminine hygiene products – because the hospital’s are of inferior quality

- Toothpaste and toothbrush

- Pajama set – Because I’m super sick of getting giant gowns that threaten to expose parts of myself that I don’t want exposed

- Reading material

- My special binder that has all of my important medical information in it

I always thought that I would be one of those people in the hospital, with my laptop and cell phone, always connected. But I’m not. I can’t seem to do much else other than lay there…

As you can see from both of these lists, it’s about the simple things in life. Aside from the cell phone, most of these things cost under $10, but they are worth their weight in gold. For me, organization and pain maintenance are key to my existence.

* All of the items mentioned here are my opinion and should not stand in for the advice of a medical professional. Additionally, these are products that I use of my own accord. I have not received compensation and/or kick backs for any of the products mentioned in this post.

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.