Thursday, February 25, 2016

I Got A Job!

Well, the title of this post says it all, doesn’t it?

Finally, a piece of good news!

After struggling with finding a job and all of the other things that have been happening over the last few months, a big piece of the puzzle has fallen into place.

I got a job at a company that does long-term homecare.  I will be a staffing coordinator and client liaison, managing patient complaints.

I am really excited about the prospect of being able to help patients, and about being the main person in charge of handling patient complaints.  I also get to create the client satisfaction survey and manage that process, as well.   

While I enjoyed my hospital job, a change of scenery was definitely in order, so I am excited to apply my skills in a new environment, especially an environment that prides itself on being “patient centered”.  

For me, since my boyfriend and I broke up and I moved back to Michigan, I’ve realized there’s a lot of myself that I have to work on – getting a job, getting a driver’s license, buying a car, and getting an apartment.  That’s a lot.  And there’s only so much of myself that I can work on at one time.  So thankfully a big piece of my puzzle has been filled.

I didn’t tell anyone about the interview.  I have found that in the past, when I talk about a job before I get it, I don’t end up getting it.  Call me superstitious, but I didn’t let anyone know until I had been offered the job.  And I’m beginning to think that this is what I am going to do with relationships, too.  Maybe I won’t make it Facebook official until I’m engaged.  Things just seem to work out better that way – and by that, I mean jobs, since I haven’t been engaged before.

While I’m so excited about my new job and the freedom I’m going to have in taking a position that no one has ever been explicitly hired to do before, I’m also feeling a bit worried about my non-work life. 

In a way, I feel like I’m cheating on my blogging side.  I want and need a full-time job.  But I also have this other side of me, as well.  Balancing being a personal and professional patient advocate is hard.

This doesn’t mean I won’t be able to attend things anymore.  Because I definitely plan to do that as much as possible.  But it means that I am balancing an 8:30-5 job, am pretty tired after work and on the weekends, so it’s an adjustment, but an adjustment that in many ways, I am happy to be making. 

I have felt like my life has been pretty out of control, and that there are so many moving pieces.  It’s hard to experience so much change and remain adaptable.  The more things change, the more they stay the same?  I’m not so sure about that. 

But I am sure that this is a great move for me and a very exciting time, and I just hope that I can be amazing at my job and remain relevant in the chronic illness online community.    

Thursday, February 11, 2016

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…

My Story On HealthCentral

I’m so excited to share with you My Story, which is being featured on HealthCentral.

You can view the multimedia story here:

Thursday, February 4, 2016

Am I Enough?

Sometimes I feel down about myself.  In the past, a lot of it was related to being sick.  But as other things have happened in my life, there are other reasons why I feel down.

When you’re applying for jobs, which can be a demoralizing experience, it can really hurt your self-esteem, and the struggle has definitely hurt mine.  I try really hard to stay positive, but when it seems like a lot is going wrong in your life, it’s hard.

After spending two and a half years in New York, it sort of feels like a failure that I couldn’t make it work.  Even though I tried really hard.  Being back in Michigan is where I know I need to be.  For some people, New York is the center of the universe.  It’s the only place that some people can imagine being.  But it just wasn’t for me. 

It’s easy to listen to the negative comments and let those be the ones that keep coming up in our minds, even when there are positive ones, too.  I don’t know why it’s so easy to focus on the haters when it is often hard to listen to compliments and praise. 

This includes blogging.  I love getting positive comments about posts.  But sometimes the comments that stick out the most are the ones that tell me that I’m not doing something right. 

I’ve been struggling.  I’ve had a lot of change in my life over the last few months and years.  And while I am lucky enough to be surrounded by love and support, some of what resounds in my mind are the comments from those who aren’t coming from a place of love and support. 

And this hurts, even when I know that the comments have no merit and are completely untrue. 

And sometimes, when you rely on others to build you up, and they don’t, you’re only left with the negative.

But having gone through everything that I have, and being able to come out on the other side, I know that I am better and stronger than some people make me out to be. 

And I need to surround myself with the people that love and support me, and try and squelch the negative as much as I can. 

The thing that’s important to know about me is that I speak my truth and I own it, and I’m sorry if that truth is not acceptable to others.  But it’s mine, and I don’t shy away from it.  Sometimes the truth hurts.  And sometimes, the truth can set you free. 

So as I sit here grappling with my truth, I also grapple with the question of Am I Enough?

I’m beginning to realize that just because I wasn’t enough for one person, doesn’t mean I’m not enough for anyone. 

And if you’re grappling with whether or not you are enough because of the struggles you are coping with, you are.  You have to believe that.  You cannot let the negative win over the positive. 

I’m trying really hard to work on this myself. 

So the answer is:

Yes, I am enough.