Looking Back On 12+ Years of Chronic Illness (RD Blog Week #2)

When I was diagnosed with lupus and RA 12 years ago, I thought my life was over. I was in my first year of graduate school. Professors and my doctors told me that I should drop out of school. I didn’t listen. But I’d be lying if I said that having lupus and RA didn’t change things for me. They definitely did.

Deciding that I didn’t want an academic career was a difficult choice, but one that I made. I knew I wouldn’t be happy or competitive in that kind of environment. It shouldn’t be that way, but at least when I was preparing to enter academia, it was.

Getting a second master’s degree in health advocacy  was another choice that I made. Looking back, I don’t regret anything (except my student loans), but I do wonder if things would be different, or if I’d feel the same way I do now.

Getting my first full time job after being a student until the age of 30, buying a house, getting engaged, getting married, and considering starting a family, are honestly things I couldn’t have imagined 12 years ago, when my life seemed to be taken over by lupus and RA. All things chronic illness.

Some things in my life have clearly settled, but in terms of what I want out of a career hasn’t. I’m trying to figure out where I belong and where my skills are best suited. I’m doing my best at maintaining a full-time job, but I’m interested in alternative careers.

I’ve worked so hard to fight my way through eight years of graduate school to not really knowing exactly where I fit in.

Honestly, when I first got sick, marriage and children were an open and unanswered question. Would I find someone who would love me despite, or in spite of, my complicated illnesses? I did. However, the jury is still out on the whole having kids thing, so that’s TBD.

At the core, I’m still me, just different. My priorities changed. And that’s how life is, even without illness.

Now, I do have a desire to have a family, so what that’s going to look like is going to be interesting. And that’s where a lot of my focus is right now. The specter of having to go off of medications that I have come to rely on, and what that will mean for my home and work life, is a huge deal. There are so many unanswered questions.

I think a lot of what having a chronic illness does is that it forces you to face unknowns that healthy people don’t necessarily have to think about.

For 12 years, my life was almost entirely consumed by chronic illness. Now it’s consumed by things that are normal for people my age; maintaining a job, exploring what else is out there, dating, engagement, marriage, children.

Obviously, chronic illness colors all of those experiences and makes most of them more difficult. But I’m no longer just a chronically ill person. I was someone’s fiancée and now I’m that person’s wife. I hope someday to become a mother.

In a way, it’s sad that chronic illness isn’t my complete focus anymore, but it’s also refreshing.

Chronic Illness Burnout: It’s Real And I’m Feeling It

I’d like to think that I take fairly good care of myself.  But moving from Michigan to New York, and from New York back to Michigan in two and a half years, and having to find a whole new cadre of doctors (twice!), has made me realize that I’ve been pretty delinquent.

I haven’t been to the eye doctor in about three years, and I’m supposed to go yearly because of the potential for retinal toxicity caused by quinacrine.  I haven’t had an annual gyno exam in almost two years, and I can’t remember the last time I had a legit physical. 

How did this happen?  And how does this constitute taking care of myself?  There are two reasons for why concentrating on my health has run amok. 

The first is that after five years of dealing with trying to get my illnesses under control, since I have had some control over the past few years, it all goes out the window.

My symptoms have evolved.  I experience a lot of fatigue, I have sores in my nose and mouth nearly constantly, my back is in constant pain, and I am battling severe dry eye.  I know that these are clear signs of some illness activity.  I know I should be dealing with them.  But I’m tired.

There’s only so much about myself that I can work on at any given time, and I guess given recent (and not so recent) events, my health hasn’t been at the top of my list.

I think that when your body is no longer constantly going haywire, it’s easy to become complacent.  It’s easy to pretend that you are healthy, or at least healthier than you’ve felt in a long time. 

This is really hard to admit.  Because my health should always be my top priority.  And recently, it just hasn’t been. 

The second is that my insurance situation has been somewhat sketchy and not continuous for the last few years, given school, having to find my own insurance because I was working a part-time job that did not offer benefits, navigating the marketplace, dealing with an insurance company going under, and then being unemployed.

I elected a PCP that my mom had seen years ago, and then when I called to make an appointment, I was told the doctor was not accepting any new patients.  I made an appointment with another doctor in the practice and called my insurance company to make that person my PCP.  Then, two hours before my appointment, they called and cancelled it.  Not only that, but they first told me the appointment was at 11:15 a.m., then 11:30 a.m., and when they called to cancel, they said it was 11:45 a.m.  It’s funny how as patients we are expected to cancel an appointment at least 24 hours in advance 0r risk having to pay for it, but doctors can cancel appointments just a few hours before with no penalty.  Needless to say, I decided that I wanted nothing to do with this particular office.  The demeanor of a doctor’s office staff can really make or break building a relationship with a doctor, even before you’ve even seen the doctor.

I then called a bunch of other doctors, none of which returned my calls.  Then I was looking at my grandmother’s doctor who was said not to be accepting new patients.  I decided to call anyway on the off chance that they were accepting new patients. 

I’ve also discovered that the system for my current insurance for picking a doctor is completely inaccurate.  They list doctors who aren’t accepting new patients as accepting new patients.  And doctors that are accepting new patients they have down as not accepting new patients.  So basically, this means that I have to call every office myself to make sure the information is accurate.   

Well, it ends up that my grandmother’s doctor is accepting new patients and I was able to get in to see him.  And he was amazing!  A new patient appointment consisted of sitting and talking with me about me medical history for almost forty-five minutes.  That was it.  He had me schedule a full physical for a later date.  But I was super impressed by how he just listened and asked questions.  He even brought up issues that I may face in pregnancy. 

He was impressed with how much of my medical history I knew off the top of my head, like being able to rattle off every medication I have ever been on to treat my lupus and RA.  I think it’s funny because I don’t know any other way to be.  I wouldn’t be on my game if I didn’t know these things. 

This experience reinforces for me why I am a patient advocate.  As stressful and frustrating as it has been for me to find a PCP within the constraints of my insurance and individual doctors’ offices rules and regulations, I imagine that many patients would simply give up.  But I can’t afford to give up.    

I’m making my health my top priority again. 

Now off to find a new rheumatologist…

The Gifts We Give Others And The Gifts We Give Ourselves

Well, I can’t believe that I’m writing this, but this is my 500^th post.  Incidentally, the 5^th anniversary of my blog came and went in April, and I kind of forgot.  That’s what happens when you are writing a dissertation and planning for the future, all at once.

I feel like I can say (and hopefully don’t jinx the fact that) things have finally started to fall into place for me.  I can’t disclose all of it right now, but I feel like I’ve found my niche, in life and in love.  I feel like I’ve found where I belong.   

I am slowing cutting ties in Michigan, which is harder than I thought it would be.  I will finish my volunteer position, which I have held for almost four years, next week.  As the next few months move forward, I will close out more and more of this chapter, as I am preparing for the next chapter. 

And it’s so strange.  I got sick here, and diagnosed here.  This blog began here.  I met my boyfriend here.

So many things have happened here.  I’ve been in this town for a total of 10 years.  A little more than a third of my life has been spent here.

And now I have to start over, make new memories somewhere else.

But I won’t be alone.

I’ve learned so much over the last several years, but mainly I have learned that there is life in spite of illness.  It can be very difficult at times, downright sucky, but it is possible.  I have had to accept my limitations, which isn’t always easy. 

And I’m learning to trust.  I had a lot of bad guy experiences following when I first got sick.  And it felt like it was me.  Like I wasn’t worthy, like I was damaged goods.  So I relied on people to build me up, who couldn’t possibly. 

But I have found that person.  And although I have to pinch myself some times to remind myself that it’s real, I can trust him.  And of course, I worry.  Of course there are moments when I’m sleeping 18 hours a day that I can’t imagine why he would hang around.  But I think were past that.  I think he’s here to say, and so am I.

So this is a reflection, but it’s also a celebration.  Somewhere along the way, I did something right.  I’m not sure what it was, because for a while it only seemed like bad things could happen to me.

My health is okay.  Not totally stable, but not careening through the universe at lightening speed, either.  I’m trying not to think too hard about the fact that when I move will come with it new insurance and new doctors. 

I don’t know who I’d be without illness.  That’s no longer an option.

Sometimes I don’t feel my age.  We’ll go out, have a drink or two, and I’m down for the rest of the weekend.  

But I also know myself better than I did before.

Sometimes I feel totally in control and sometimes I feel like I have no idea what’s going on.  Being sick has taught me that in many ways, we aren’t in control. 

It’s weird to think that illness may have been a gift.  It’s kind of a macabre thought.  But as I look back, I could see ending up insanely unhappy if I would have stayed directly on the path that I was on.  It took illness to make me see what was truly important, and what I am truly passionate about.

Now on the days when I can’t get out of bed, remind me that I said this.  But for right now, things are different than I expected them to be, and that’s not necessarily a bad thing. 

This is my story.  And this is only the beginning.

Just a note that my blogging may be less consistent over the next several months, as I finish my dissertation, defend it, move to another state, and begin the next chapter.  I hope I have loads of time to keep blogging, but if not, you know why, and know that it is only a temporary hiatus.

So please keep reading.

I owe so much to the community that has been created here.  So thank you, from the bottom of my heart.

This blog has been a gift for me.  You all have been gifts.  And I hope that I have helped or inspired or made you think or laugh or cry.

Chronic Illness And Decision Fatigue

I am a notoriously terrible decision maker.  Just ask my boyfriend.

But the reality is, I am good at making the big decisions, but when it comes to things like what to make for dinner or where to go, I just don’t care.

I mean, I do care, but I don’t.  Because to me, those little things don’t matter so much.

As chronically ill people, we make so many decisions.  All the time.  And most of the time, they are big important things that can really impact our lives.  Like medications, procedures, you name it. 

And the thing is, by the time I’ve made all of the important decisions, I don’t feel like having to make more decisions.  

It’s decision fatigue. 

And I have a feeling that a lot of us with chronic illnesses experience this. 

Decision fatigue can happen to anyone, but seems particularly apt in the case of chronically ill people.

Being the Type-A-er that I am, I have always had a hard time saying “no”.  In the past, this has caused me to overcommit, to the point of being extreme.

Over the past year, however, I think I have done a better job of saying “no” to things or skipping things that would be an energy suck that are not worth it. 

Mainly, though, I have had a significant amount of time where I’ve been unable to function, which has necessitated clearing my schedule of everything but the most necessary things that I have had to do. 

This, of course, ebbs and flows, but there are times when my body says “no” for me.  When I don’t have any other choice but to say “no”. 

And it is still hard for me to say “no” or to admit that I can’t do everything and have to pick my tasks wisely. 

And sometimes, even when you want to do something and you do it, you have to be okay with the consequences.  

I have to accept the fact that when I fly to New York on Thursday evening, have an event there on Friday, and fly back to Michigan on Saturday morning (necessitating getting up at 6 a.m.), I am going to pay for it.  But it was totally worth it.

There are other times, though, when doing something just isn’t worth the price you pay. 

And that’s why we have to pick our battles and commitments wisely.

 

There are certain things I won’t give up on, no matter what.

But there are other things that just aren’t worth the cost.  

This is a really hard fact to accept.  And I’m totally sure I’m there yet.  But every time I overdue it, my body rebels.  And reminds me that I’m sick and don’t have unlimited energy stores. 

So many of us suffer from regular fatigue, and I guess decision fatigue is just another part of being chronically ill.