The Private Struggle Of A Medication Transition

The last two and a half weeks have been hell for me.  They’ve been a blur, really. 

There have been some good moments, but they have been between periods of complete and utter exhaustion, fatigue in which sleep only adds to it. 

My knees have felt like they are made of glass, like they could shatter into a million pieces at any moment.  My sinuses have felt like they were going to jump out of my head.  I have had horrendous heartburn that has kept me up at night.  I’ve felt like I’m constantly coming down with something, like I am about to get sick.  But I know I’m not.  That’s just the immunosuppressant working its magic.

The worst part, though, aside from the fatigue, is the fact that I have felt nauseous and dizzy a good portion of the time.

I just hoped that in whatever way my body was adjusting to this new medication, that it would just do it already, because the last few weeks have been brutal. 

I’ve never had such side effects with a medication that have lasted for so long after I first started taking it.   

When I finally e-mailed my rheumatologist, he told me to stop taking the morning dose and just take the night one instead of both.  I guess I waited so long to be optimistic that things would get better, but then when they didn’t, the answer seemed so simple and obvious that I should have made contact with my rheum sooner.

Basically, I’ve been overmedicated.  So it seems highly unlikely that the situation would have resolved itself without a decrease in dosage.

I don’t want to give up on this medication (Tacrolimus) yet.  I know I haven’t been on it long enough to know if it is truly working.  But I also didn’t think I could survive the next month to month-and-a-half of waiting for it work, if I was going to be so non-functional.

I fell asleep in class the other day.  It has really been a struggle for me to get myself where I needed to go.  The fatigue I’ve been experiencing I haven’t seen the likes of since I first got sick, and literally would wake up, go to class, come home and sleep.  Luckily my schedule is a little bit flexible, however, I don’t like having to forego things because I’m too tired.    

I had my first mandatory labs last week.  Does it make me a bad person to wish that the blood work came back out of whack?  Well, that was before I talked to my rheum and he suggested I lower the dose.  But the reality is that the labs all came back normal.  Freakishly normal.  My liver enzymes have never been so normal.

I feel like such a jerk.  I was so adamant about not going on the Rituxan, I dreaded having to complain to my rheumatologist that I didn’t think I could wait the requisite two months to see if this stuff was going to work. 

But thankfully, it doesn’t look like we are going to have to have that conversation.

You truly don’t realize how bad you feel until you start feeling better.  In one day, I graded thirty papers.  I still don’t feel 100%, but I think I can safely say that I am finally on the upswing.  I accomplished more in one day than I have in the last two weeks combined. 

But the thing that makes it so tough to deal with is that you can’t really talk about it.  As I’ve lamented various things, my boyfriend – who has been amazing throughout this difficult period – has told me, “But you have an excuse.”  But I don’t.  At least I don’t feel like I do. 

How do you explain to people who don’t understand that you’re trying a new medication that is supposed to suppress your overactive immune system, and stop your body from attacking your organs and joints, but you just haven’t been able to tolerate the medication?  So you have been sleeping in spurts of three hours, only to be up for an hour or two, and need another few hours of sleep to recover from the time you’ve been up?  And this is after sleeping at least eight hours at night.

“Normal”, healthy people can’t begin to understand that.  And I’m glad they don’t.  But it’s hard to explain erratic, strange behavior when you simply don’t want to talk about it.  When healthy people can’t imagine being on a medication that has such an effect on your body.  Medication is supposed to help, right?  But what happens when the cure is worse than the disease?  What if you have to go through hell to see the light at the end of the tunnel?  If you haven’t been there, you don’t know, you can’t imagine the lengths you will go to in the name of health. 

But it’s so hard.  All of the medications we try for Lupus and RA – or most chronic illnesses, for that matter – have side effects.  They all have their pros and their cons.  And even when they work, they all take getting used to.  So it’s hard to explain how transitioning off of old meds and onto new ones can honestly be worse than your actual illness.  But how do you explain that to people who don’t know?  How can they possibly begin to understand that until your dose gets regulated and your body gets used to a new medication, that it’s full court press?  That it sometimes takes all the time and effort you have?  That it sucks you dry?  That it literally can all but stop you from functioning? 

I don’t know how to explain that to people who aren’t chronically ill.  And so, I think to make it easier on myself, I don’t.  But it might make things harder for me if I don’t.  So if I have to, I just say that I’ve been sick.  It’s not totally a lie and not totally the truth.  And you don’t get any sympathy from anyone if you explain that you are sick all the time.  They really don’t get that, either.

The last two weeks, I have literally had to scrape myself out of bed and drag myself to where I’ve needed to be.  I can’t really imagine how I would have gone on like that if I hadn’t talked to my rheum, and he suggested that I only take Tacro at night. 

I guess I assumed that since Tacro is used at much lower doses for those with Lupus and RA, as opposed to people that have had organ transplants, that I wouldn’t have as many side effects, either, but I was totally wrong on that front.  And this isn’t intended to me a “poor me” post.  To the contrary, I am grateful that, for the moment, every little step does not take an immense amount of effort, that I can do more than just sleep.  It’s too soon to know if the Tacro is working, but at least for the moment, I can say that it’s not destroying my life, either.  Baby steps…

When you have a chronic illness – especially an invisible one – most of the struggle is only seen by those you are most intimate with.  But the struggle feels visible to us because we live it every minute of every hour of every day.  For us, the struggle is never-ending.  We simply cannot turn our illnesses on and off at will, and neither can we truly anticipate what the effects of a medication may be.     

Patients For A Moment Shit Tactless Idiots Say Edition

For the March 2013 edition of Patients For A Moment, I asked bloggers to write a post about the worst, most stupid, offensive, hurtful, or just plain dumb comments they had ever received from someone in regards to their illness.

To start off, Aviva from Sick Momma, wrote the post “People Say The Darndest Things”.  Not only does Aviva share some of the ridiculous things people have said to her, she also shares a story of her saying something to a chronically ill friend that maybe she shouldn’t have said.  It just goes to show that even though, as chronically ill people, we tend to be more aware and careful about the things we say, we are occasionally guilty of putting our foot in our own mouths from time to time, even when we are talking about illness.  I love her honesty!

At In Sickness As In Health, Barbara Kivowitz shares with us the post, “Dumb Things Practitioners Have Said”.  She says that the dumbest thing a doctor has ever said to her was suggesting her partner wait in the waiting room.  Barbara says that couples are dealing with illness together, and even though, in most cases, only one partner is sick, they should both be viewed by doctors as integral parts of illness experience. 

Duncan Cross shares the post, “DO NOT Guess My Weight”.  While the title of the post made me think of those giant scales at carnivals where a carnival worker tries to guess your weight, and if they don’t, you win a prize, this post is actually very serious.  Duncan says that he usually tries not to let the stupid things people say bother him, with one exception – when people comment on his weight and offer up wishes of being able to lose weight like him (which, of course, he doesn’t do on purpose and is due to his illness).  I love his wry humor!       

Many of us who have been on Prednisone have experienced comments like Duncan has about our weight, but in the opposite direction – of how we’ve gotten rounder or our face has gotten fuller.  And it’s like, thank you captain obvious, as if I hadn’t noticed this myself without needing someone to make it 100% clear to me.  Anyway, I digress…

From Sometimes, it is Lupus, Iris Carden shares two posts with us.  The first is a post titled “Helpful Advice”, in which she talks about well-meaning people who offer advice when they have no clue about chronic illness.  The second is a post titled “At Least You Don’t Have Cancer”.  Iris says that a lot of times, people will minimize her dealing with Lupus and tell her that because she doesn’t have cancer, she doesn’t have it so bad after all.  I personally hate it when people compare suffering.  The who-has-it-worse game isn’t productive, in my view, and I totally understand Iris’s frustration in this regard.

I’ll end this edition with my post, “Shit Tactless Idiots Say To Sick People,” which was the inspiration for this edition of PFAM.  In the post, I went through some of the dumbest comments I have heard in regards to my illnesses and possible come backs.

No one who has a chronic illness is immune to receiving comments from others that at best frustrating and at worse make us want to never share anything about our illnesses with others ever again.

Thanks to those who submitted their posts for this edition.   

The next edition of PFAM will be April 15, 2013, and will be hosted by Selena at Oh My Aches and Pains!.

“Patients For A Moment” Is Here March 15, 2013

Back in October, I wrote a post called “Shit Tactless Idiots Say To Sick People,” in which I went through some of the dumbest comments I have heard in regards to my illnesses and possible come backs.

For the March edition of PFAM, I want you to either write a post like mine, or you can share an experience of the worst, most stupid, offensive, hurtful, just plain dumb comment you have ever received from someone. 

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. March 13th, 2013. 

Interview With Author Barbara Kivowitz*

I recently read “In Sickness As In Health” by Barbara Kivowitz and Roanne Weisman.  The book explores the issues that couples dealing with chronic illness face. 

I’ve invited Barbara here today to tell you a little bit about herself and the book. 

I have to say, the book is really beautifully written.  It is poignant.  And it deals with a topic that is hard for many of us with chronic illnesses to face.  We want to have intimate relationships, but how will those relationships stack up when illness is involved.    

Barbara, first off, can you tell my readers a little bit about yourself?

BK:  I am the ill partner in my relationship, and we have been living with my chronic pain condition for 12 years.  I say “we” because while the condition resides in my body, both our lives have been changed.  I used to be a psychotherapist and now work as a management consultant.  I can no longer eat chocolate or drink coffee.  Mystery novels are my drug of choice.  My dog died about five years ago, and I am finally ready to get another one.  My quote for the year is Emily Dickinson’s “Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all.”  However, when hope does stop for me, I look to my partner, Richard, to find it. 

I know you from your blog “In Sickness As In Health.”  Can you describe the transition from blog to book?

BK:  When I first got slammed by this pain condition I never asked, “Why me?”  I just yelled, “Help me.”  I wasn’t sure from whom I was seeking help, but heroes turned up.  My main one was and is Richard.  His unflagging support and belief in my healing was as curative as any medication or therapy.  I wanted to hear what it was like for other couples living with illness, so I began my blog In Sickness As In Health.  Some people had heroic partners, others had soul crushers, and others had partners who just didn’t know what to do.  Nor did they (the ill partner) know how to connect with their well partner with the added intrusion of illness into what had been a normal relationship based on a simpler compatibility.  I heard so many profound stories; I realized there is a book here.  Also since there was nothing out there to help us and most couples feel so alone in their illness situation (as we did), we need to learn from each other, and from those few experts who do pay attention to the impact of illness on the couple relationship.  The book combines couple stories, with relationship and practical advice and hopefully helps readers piece together what’s useful for them.  

Along the same lines, can you explain why in the book you focused on experts and other patients, and not very much on the experiences of yourself and your co-author?

BK:  We anonymized our interviewees so that no one can be identified and people’s confidentiality would be protected.  Our stories are in the book – but we did not name ourselves so that all storytellers are equal.   However, in interviews, it would be too awkward not to self identify.  I am the pain story and Roanne is the stroke story.

For many people, the words “in sickness and in health” are purely hypothetical.  Most of the couples you talk to in the book don’t start off with illness.  It is months or years into the relationship before chronic health issues emerge.  What advice do you have for couples who begin a relationship in which one of the partners is already ill (like myself, for example)? 

BK:  Entering a relationship with illness is complicated and the question quickly arises about what to tell (and show) and when, and there is no one right answer for all situations.  And this isn’t a one-time discussion.  You both will need to keep talking as intimacy deepens, and as your illness changes.  Balancing honesty to your new partner with your own privacy needs is a tricky equation.  Your health and its requirements are your business, but just like other aspects of your heart, mind, and soul, your health starts to stretch to become shared ground.  Having illness as part of the landscape forces authentic communication more quickly, for both partners.

So, what are some considerations when illness is there at the outset of a relationship?

Wait until he/she starts to matter to you to talk about your illness.  But don't wait too long.

Be willing to answer questions, even before he/she asks them.

Be as comfortable with your condition as you want your partner to be. Your own acceptance level of your condition will have an impact on his/her experience of the situation.

Give him/her time, space, attention, and empathy to learn and assimilate.

The well partner should give you the time, space, and empathy you need, as you talk about your illness.

Also remember that while you have an illness, you are not your illness; and your relationship is greater than your illness.

Talking about your illness is paving the way towards greater honesty and authenticity in your relationship – just as talking about values, love, and dreams are.  Bring your full self to the table, be generous, ask for what you need, and don’t forget to laugh.

That’s great advice!  The book seems to talk a lot about a synergy that tends to exist in couples where one or both partners are facing chronic illness.  It seems like balance is key.  Is this correct?  I know in my current relationship, my boyfriend is very positive while I tend to be more on the negative side.  While I sometimes think he is too optimistic, I can’t really imagine being in a relationship with someone as negative as I can be. 

BK:  What a great question.  Relationships are all about balance.  Do our similarities join us or bore us?  Do our differences complement or divide? Balance can create unity out of separateness.   And imbalance can challenge each person to grow.  So the question is, does the balance you have in your relationship help you expand as a couple and as individuals, or does it stifle or even damage you?  Illness is an accelerator and makes clear more quickly where there is a good working balance and where there is unhealthy misalignment.

I tend to see the glass as totally empty.  When I was at my sickest, hope was just an invitation to disappointment, and any little worsening of a symptom was a confirmation of what I truly believed – that I was sentenced to eternal pain.  I counted on Richard to hold the hope.  And he, as a scientist and pragmatist, truly believed I would get better.  He never had to fake it.  This balance was fundamental.

You talk about illness as a “third party” in the relationship.  This is something I truly believe.  I usually say that illness is a “third party waiting to get in on the action.”  Illness can be devastating for even the strongest of couples.  While I would like to think that all couples can make it work, some ultimately cannot.  What advice do you have for people who can’t get past the devastation that illness can cause?

BK:  You are right that illness can be devastating for even the strongest couples.  However, the partners we interviewed whose relationship was ruined by illness tended to be those whose relationship had not been on fully solid ground pre-illness.  Their relationship fractures had been masked by the velocity and routines of daily life.  Illness served as the final disruptor and took the rap for the termination of something that was already decomposing.  In some situations, substance or emotional abuse had been present for years.  In others, the couple had just never learned to talk about the hard stuff without blame or retreat.  We didn’t hear of a situation in which illness, even really debilitating, interruptive illness was the sole reason for the end of a relationship.  More often, illness was the tipping point for something that was on the edge already. 

Now sometimes, the illness can be so intrusive that the partners need to renegotiate their space.  They may need more time alone or with other people to revive flagging energy.  In one situation, the well partner had to decide to move her very ill husband to assisted living because she no longer had the emotional or physical strength to care for him, herself.  But this freed her to remember how to love him. 

Assuming there is love, the strongest counterbalance we have for the devastation is communication.  The ability to talk about the impact of illness is the ability to share one’s reality and needs and make adjustments – which should come into play in any relationship.  And, I want to underscore, that this ability can be learned and improved.  Our partners talk about this in the book.

You remind us that illness isn’t just about the couple, but also about their social network.  Can you say more about this?

BK:  We live in circles within circles.  Our closest circle is the one we have with our partner.  Around that one is the one that we have with our immediate family and the friends who are our family.  Around that is the one we have with our extended family and extended friends and colleagues.  With illness, your care providers and healers become part of a circle.   When we tend to these circles, they are able to be more present for us.

Illness has a ripple effect throughout each circle of relationships, with the greatest effect felt by those circles that are closest to us.   When I’m having a relapse, I have to tell the people in my circles that any plans I make are provisional and may be cancelled if my pain level decides I can’t make it.  This affects my partner on a daily basis and a more distant friend or colleague only if we happen to have an event scheduled. 

These social networks not only receive the impact of illness, but they are also sources of love and support.  I knew I could count on my innermost circles to sustain me; but what surprised me was how much kindness I received from outer circles when I let them know I was having a tough time.  A work colleague who knew of my addiction to mysteries gave me a boxful of books when I was in relapse mode.  A neighbor whom I waved to when we crossed paths on the street brought over homemade soup. 

Can you explain the reasoning for including a chapter specifically about military couples?

BK:  It started with a situation I heard from an army nurse who told me about a wounded warrior who returned from Iraq with a traumatic brain injury that changed him and about how hard it was for his wife and children to know how to live with him any more. I began to look at just how many people have been injured by the wars in Iraq and Afghanistan.   50,000 have suffered physical injuries; 320,000 have traumatic brain injury, and 400,000 live with depression and post traumatic stress disorder.   Regardless of your politics, a lot of warriors and their partners are affected by the damage done to them by these wars, and we thought their stories needed telling.

What have you learned from your own experiences with illness?

BK:  Having illness as part of your relationship, to put it bluntly, sucks.  It brings with it hardships other couples don’t have to deal with usually until very late in life.  It’s natural to feel cheated of the luxury of being able to take things for granted – like making plans, eating what you like, travelling. But illness can also be the crucible that strengthens your relationship, that forces honest communication about what you feel and what you need and what you can give. Illness can help you focus on what really matters.  And that can certainly include watching Dr. Who or Downton Abbey.

What do you hope readers will get from your book?

BK:  Couples living with illness can feel pretty isolated from the mainstream.  And since the world of couples tends to be a private one anyway, we can’t know how other couples live with their illness situation.  So we hope this book give readers a sense that as couples dealing with illness, we’re not alone.  Our stories matter and we can learn from each other.  We also think couples living with illness have a lot to teach all couples.  In addition, while the book is a relationship book, it also has lots of practical advice about managing the health care system, finding resources, and legal and financial planning.

What’s next for you?

BK:  Thank you for this invitation to be interviewed on Getting Closer to Myself and for asking such insightful questions about In Sickness As In Health. 

Most immediately, the book came out on Friday (March 1, 2013) – so we are in the thick of getting the word out.  My coauthor and I could have used a book like this during our illness experiences, and we hope it reaches and helps as many people as possible – couples, their circles, and health care providers.  People can learn more about the book at http://www.insicknessasinhealth.com/.

Six months from now, I hope Richard and I are walking our dog, and I’m starting to do research on my next book (topic to be determined).

Thanks, Barbara, for stopping by Getting Closer to Myself today. 

*I received a pre-publication copy of this book from the author.  However, my choice to have Barbara as a guest blogger was my choice, and had to do with my personal opinion of the book.