A House Divided, But We Stand United

I am lucky that I have a job that is allowing me to work from home, potentially for the long haul. I am lucky that I have a company laptop, and that our house has a reliable internet connection and all of the other necessities that I need to be able to do my job from home.

And just to be clear, my company wasn’t set up for this. My set-up at work includes a laptop and an additional monitor, while the normal set-up is two monitors. I started working from a home a week before all hell broke loose, not realizing that this would become anything other than temporary situation.

On the other hand, my husband works at a big box store that has been open for the duration of the pandemic as it has been deemed “essential”. (No offense to my husband’s livelihood, but this #HighRiskCovid19 wife disagrees with that designation) His job cannot be done from home. His continuing to work unfortunately increases the risk level of bringing COVID into our house. Due to other issues, my husband didn’t work for several weeks when the pandemic was really starting to surge in Michigan. One thing his employer has done is provide a fair amount of additional paid and unpaid time. My husband basically takes several days off a week to limit exposure, but also to stretch the amount of time off he has to utilize.

And to be honest, we had the conversation of going without his income. If he felt the risk became too great, he could take unpaid leave. Unfortunately, when you live with someone who is #HighRiskCovid19 but doesn’t have COVID-19, that scenario doesn’t fit into any of the extra-extra time off categories. So just because I’m high risk and my husband lives with me and loves me, doesn’t mean that his employer (or anyone) feels that he should get over and above time off to minimize his risk, which subsequently becomes my risk. And it’s not just his employer. There seems to be a black hole for this type of situation.

And making this is decision wasn’t just about me. We had to consider my husband’s mental health. What would it be like for him to not have anything to do and nowhere to go all the time? On the flipside, we don’t want his mental health to suffer if the concern for risk at work becomes too great and he is anxious all the time about the risk to either of us.

While we could live without my husband’s income, we cannot live without his benefits, which means he has to work enough so that his paycheck is enough to cover our benefits.

We are lucky in so many ways. But this struggle is real. The decision for my husband to go back to work after his initial time off was something that we both agonized over. Because once the cat is out of the bag, there’s no turning back. If he ends up exposed, forget everything.

These are the steps we’ve taken to do what we can to minimize the risk of my husband getting exposed to COVID-19 and bringing it home and exposing me:

1.       My husband wears gloves and a mask at work;

2.      He leaves a change of clothes in the garage, changes in the garage when he gets home, and leaves his work clothes in the garage until he washes them;

3.      We got him his own thermometer to take his temperature – doesn’t seem like the best thing to share at this point (and I don’t trust the inexpensive forehead thermometers that we could share);

4.      We have a very small stock of our own gloves and masks so that he isn’t relying on his employer to provide PPE;

5.      He uses disposable items to transport and eat his lunch rather than using items from home, like reusable containers, bags, and utensils, so these items are not being brought back into our house. 

Of course, by virtue of my husband leaving the house and going into an environment with co-workers and customers coming from all over, there will never not be a risk. But we are doing the best we can with the situation we have, knowing that we are incredibly lucky to both still have jobs during this difficult time.

And while we are divided in our ability to work from home, we are united in the quest for both of us to stay COVID-free.

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.    

Finding My Way Back To Myself (And My Blog)

Over the last five months, I’ve been really struggling.  My time has been consumed by a job that I used to love, but had increasingly become toxic.  And then it was ripped out of from under me once again, almost as quickly and easily as it had fallen into my lap.

I promised myself this time that I would concentrate on the fact that the job was only temporary.  And I wouldn’t get seduced into thinking that I could make a career out of it.

It doesn’t make sense.  I know my supervisor will retire in the next few years, and the person that they hired after my first stint, talks openly about the fact that he will retire in a few years as well, so I can’t figure out why they wouldn’t want someone young and fresh to groom to make a career there.  But I guess that’s not my choice to make.

It seems that the problems of the patients that I was dealing with consumed me.  When I first started working there, I was so pumped and energized, and felt like I was really helping people.  But then things started going awry, patient complaints got worse and came in much more frequently, and I was increasingly having to put out fires that I didn’t cause.  But that doesn’t mean that I was ready to throw in the towel, not by a long shot.

But in that time, everything else has fallen by the wayside.  My blog has suffered, my writing for the other blog sites I write for has suffered, and the only time that I’ve been truly happy is when I’ve been doing patient advocacy work, going to conferences, being around other patients, and speaking.

Sometimes life throws us opportunities.  And I am grateful for the opportunity that I was given in my previous position.  It has taught me about myself, and what I do and don’t want to do.  First and foremost, I want to help patients navigate their healthcare.  I want to be part of the solution and not part of the problem. 

When my first stint came to an end, I was devastated.  However, I looked at it in two ways.  One is that the offer came at a time, a few months after my dad died, that gave me the ability to get out of bed and have somewhere to go every day, when I easily could have disengaged completely.  It gave me a purpose.  And two, then I had time, just as school was getting crazy and coming to an end, so I was able to finish strong.

This time, I was also devastated, but not surprised.  I worried all along that something would happen that would leave me jobless.  And apparently, budget cuts are at the heart of this (at least that’s what I was told). 

I put so much time and effort into this position.  I gave it everything I had, and then some.  And again, I allowed everything to suffer, my relationships included. 

So now I’m working on getting back to what I know and love – blogging, writing, advocacy, and creating small jobs for myself that will hopefully lead to something bigger and better.

I know that wherever I end up, I have a lot to offer, it’s just a matter of finding that place.  I have so much energy and passion, which I put into my last job, and which I will exude wherever I end up next.

I’m not too proud to ask for help, so if anyone has any leads on jobs that might be a good fit for me, please send them my way.

In the end, this blog is called Getting Closer to Myself.  That’s what I’ve been trying to do from the start, is figure myself out, and helping improve the world along the way.

Failure Does Not Come Easy

It’s funny – as in not – when you write a post about loss and later in that same day, you experience another loss, but of a different kind.

Failure, of any kind, has never come easy to me.  And I think I’ve become even more stubborn and pigheaded since I got sick. 

If someone tells me I can’t, it only motivates me to show them that I can.

My schedule has been very difficult for me, which I’ve talked about a lot here – balancing work, school, life, and illness. 

I know that I’ve worked my ass off in this job, and that I wanted this job more than anyone else they interviewed.  And that wasn’t enough.  There was nothing more that I could have done.

I want to work, so just let me work. 

I know that there are a lot of people out there with lupus and RA who can’t work, and I know how lucky I am that I can.    

This job, which came about after I left my internship, when my dad died, gave me a reason to get up and get out of bed in the morning.  I had somewhere to go.  In the emptiness that New York can feel like, I finally had a place where I belonged. 

A lot of people have been telling me lately that everything happens for a reason.  But ever since my dad died, I’ve been having a crisis of faith.  I felt called to this position, like this is what I was meant to do, and now I’m questioning everything.   

I’ve been bitten by the advocacy bug, it’s in my blood.  And it has felt so amazing to advocate for patients other than myself, and to take what was a profoundly negative experience in my life and turn it into something positive. 

I know something will come along; I have too many degrees for it not to.  But I was happy here.  I felt at home here.  This job was reason enough for me to force down my feelings about this city and stay. 

Clearly, it wasn’t a definite. 

In my view, it was 98% assured, and therefore, I find myself falling yet again into that ugly 2% of this never happens to anyone, but it happens to me. 

It’s frustrating to be somewhere, where you feel like you’ve found a place, and then be told that you’re not.

I’m a professional, and I’m going to work until they tell me I’m done.  The patients don’t deserve to suffer or experience my frustration at this situation.  They are the number one priority in my work, and I am going to keep it that way.   

Aside from the fact that I love my work and the people I work with, which is the number one most upsetting part of this, I now have bills to pay, and not working is going to complicate that. 

And truth be told, I know this is totally a first-world problem, but this is the first job I’ve ever lost.  In the past, I have completed that phase in my life, and it was time to move on, in a way that was very mutual, if not exclusively guided by me.  So that’s a hard pill to swallow.  I’ve been rejected from plenty of jobs I’ve applied to, but never one I was already working in. 

I know I’ll get through this, I always do.  I’ve already started looking for other jobs.  But that doesn’t mediate the hurt and the sting that I feel right now. 

As the BF said, this isn’t the worst thing that has happened in the last year, which makes it even worse.    

But, nudge, nudge, wink, wink, I am going to need a job ASAP, especially once May hits, so if anyone has any ideas or leads, please let me know.  I am not too proud to ask for help…

On Becoming A Professional Patient

Lately something I am really struggling with is balancing blog commitments with my work and school commitments.

So many amazing opportunities have come my way in the last year and a half, as far as my blog is concerned, but it is hard to keep that momentum going; I’ve had the opportunity to attend, most recently, Stanford Medicine X, the ePatient Connections conference, and a Creaky Joints meeting.  This weekend I will be attending a meet-up at the American College of Rheumatology (ACR) annual meeting. 

Now that I’m working part-time – four days a week – and going to school one day a week – I am exhausted all the time.  This means I do not have the time or energy to work out, or do much else of anything.  I’m lucky on nights where I don’t fall asleep on the couch before 9:30 p.m.

I know many people with chronic illnesses that are self-employed.  And I certainly get the flexibility that it provides.  However, it also means that you are responsible for finding and paying for health insurance, it may mean that you do not have a steady or consistent income, and you may not have other perks that a more traditional job might provide. 

On the other hand, self-employment allows you to take breaks throughout the day, makes it so that you do not have to call in sick every time you don’t feel good, and allows you to accommodate any other needs specific to your health condition. 

So what is the best way to deal with this?

By May, I will have two Master’s degrees and a PhD.  The thought of not working after all of that seems silly. 

But a 9-5 job is exhausting. 

Having a full-time, traditional job also means that I would have to find an employer flexible enough to allow me to take time off to attend conferences and other events, or it means having to give up those opportunities.  It also means being straightforward and realistic about my health issues and how they could potentially impact a traditional job.    

Obviously, I’m aware of how lucky I am to have this problem. 

Trust me, I know. 

My blog has sustained me these last six years, so it’s hard to imagine having to walk away just as the momentum has picked up. 

So how do you balance “real life” and blog life?  Do you think it’s possible to have a professional job as a patient/advocate and a job writing blog posts and attending conferences as a patient/advocate? 

In some ways, because of where my professional life is going, these two things are not really separate entities anymore.  But when I face the realities of what full-time work might mean, if that is sustainable as my illnesses ebb and flow, I also face the reality that I can only do so much. 

When it comes to purely social events, I’ve become really good at knowing what my limits are.  But when it comes to school, work, and blog stuff, I haven’t found that sweet spot yet, or the ability to say no to things.  As opportunities come my way, I want to embrace all of them. 

So what gives? 

How do I keep this part of my life that I’ve built from the ground up in terms of blogging, and the side of my life that I’ve worked so hard for?  

Slow Going

You’ve probably noticed that I haven’t been blogging as frequently as usual. That’s because I’ve been trying to get used to my increased dose of flexeril and work has been pretty busy.

It’s funny because when I’m feeling bad, I have more energy than I do when I feel good, but am totally exhausted, which is today in a nutshell. I’m not in too much pain, but I feel like I am just starting to wake up… And I’ve actually been up for over six hours…

This has been the busiest work week yet, with lunch and dinner meetings, and trying to get my project to completion. And then there is the fatigue that has decided to rear its ugly head, yet again. I thought the point of the flexeril was to make me less tired and more rested.

The problem is that last night I wasn’t able to get a sound sleep. I kept waking up. And when that happens, it takes forever for the flexeril to wear off the next day. I fell asleep super early on the couch because I was exhausted, but you wouldn’t know it by the way I feel today.

I’ve had two meetings already and have two more before the week is over, plus a dinner thing and a baseball game (I'm not playing!!!), and I was invited to a party.

The party is causing me a lot of stress. I feel like I probably shouldn’t go for several reasons:

- I don’t drive and I would need to get a ride. The problem with this is that then I will be at the mercy of another person as to how long I stay at the party. This worries me because I’m not sure I will be able to stay that long and I don’t want to ruin someone else’s good time.
- While it’s fine if I fall asleep on my own couch at 8 o’clock, it’s not as if I can do that at someone else’s house. What if I end up being hit with a wave of fatigue at the party?
- What if I do find a ride, but end up not being able to go because I’m too tired or don’t feel well?
- If I turn down another invitation, will people stop inviting me?

It’s not as if I can really even talk to my friends about it because they can’t begin to understand. It’s not like saying what should I wear today? The question is more to the effect of how much is this activity going to cost me?

And when I’m worried about fatigue, it’s not your garden variety I’m tired. It’s a fatigue that I can’t fight. It hits and all I can do is succumb to it. It’s a fatigue that caffeine can’t cure. I feel like either I have no reserve of energy or I’m already running on my reserve. Either way, I need more sleep to regain the energy I expend each day.

Most people don’t understand how you can still feel the effects of an activity you did a week ago. But everything seems to hit me harder these days. Yesterday, I had to go to the hospital to pick up a prescription. It took forever. What was supposed to be a quick trip ended up, in total, taking almost two hours. By the time I got home, I was totally exhausted.

I think a lot of us challenge ourselves and end up regretting it. That’s what I mean when I have to think about how much the activity is going to cost me. If I go to the party, how many days afterward am I going to feel exhausted? And if I don’t go, will people think I am a socially impaired loser?

I fear that I might be becoming the latter. Lately, staying home or saying no is easier than weighing the consequences of my actions. Especially because it seems like the extra errands I throw into my day end up being a lot more difficult than I expect them to be, these bigger things are bound only to cause trouble.

So once again, I’m torn between the life I should be living as a 22 year old, and the reality of the life I’m living as a 22 year old with a chronic illness. Plus, I’m having a serious identity crisis and feel like I look terrible, so who wants to be in the company of others when they feel like that?

The End To A Very Long Week

Yes, it’s over… and I survived!!!

I had that class this week and it went okay. As I suspected would happen, I was so exhausted after work that I fell asleep reading. After two nights of this pathetic dance, in which I managed to get only half of the reading done, I opted to throw in the towel in order to maintain my sanity.

I think this may have been a watershed moment for me on two accounts:
1. I wasn’t wrong about how this would turn out, after all. I guess I know my body better than I think I do. The next time someone tries to get me to do something I know I can’t, I’ll have to fight harder against having to do it.
2. I think I’m finally learning that it’s okay to let things go. School has always come first for me, but now it’s clear to me that my health has to. Okay, so there wasn’t a whole lot at stake here. It wasn’t a graded class. But it made me realize that I can do little more than the minimum, and skate by, if need be. I don’t plan on making this a habit, but it’s nice to know that I can if I need to.

That’s not to say, however, that this experience doesn’t add worry to my life. It makes me wonder how in the world I am going to be able to handle class and teaching in the fall. But that is a whole other story. For now, I am just planning on enjoying what is left of this weekend, and gearing myself up for what promises to be yet another crazy work week (minus the class, thank goodness!).

We Have To Talk/The Truth Takes Time

Something big happened on Friday. Something that I’ve needed to do for about, oh, eight months or so now.

Unfortunately, I was far too tired to write about it then. So I am writing about it now.

I told my boss about my health issues. I was worried that the story would be met with the same lack of understanding and skeptical glances that so many others have met it with. But I was pleasantly surprised.

I didn’t think it was fair, the way I’ve been feeling for the past few days, to not say something about it. When I applied for the internship, things were so crazy and all over the place that it didn’t make sense to mention anything about it. So, I prepared a script in my head so that I would know what I wanted to say. This is uncharted territory for me:

So, I’ve been having some health issues recently. And I never realized how much this job was going to take out of me. I don’t really want to cut back on hours, but I was wondering if I could come in earlier in the morning and leave earlier in the afternoon/evening, take a lunch somedays/somedays not, and take a bit of a longer break if I need to. I’m totally willing to make up any hours that I miss. I don’t want you to think that I’m trying to get out of doing work. That’s not it at all. I just want to make sure that when I am working, I’m as productive as possible.

This was met with a very sympathetic response. I was told that I could work my schedule as I needed to, work from home when I needed to, and do work either at the office or at home on the weekends to makeup for any time I miss during the week.

What I haven’t quite learned yet is that if someone is telling me that this is all okay, and I’m getting the work done, even if it isn’t exactly in the confines of a nine to five office job, I shouldn’t feel guilty about it.

But then, later in the afternoon on Friday, my boss came into my office and told me that I could leave. It was 3:30. You’re tired, my boss said. Now see, this is precisely what I didn’t want. My boss doesn’t know my body. I know my body. I don’t need to be told when I’m tired. I didn’t want to be pigeonholed, viewed as a “sick person.”

I think that compared to some others in my life, this person was, overall, incredibly responsive. I don’t want to be one of those people who are never satisfied. And I can’t fight “city hall.” But I guess this wasn’t exactly what I was hoping for.

If there’s one thing I’ve learned this year, though, it’s that I have to take care of myself. Look what happened when I thought I was taking care of myself. Now there’s no excuse not to. That said, my body and sleep schedule still haven’t caught up with work and my body is still apparently stuck on the schedule that involved me sleeping for at least an hour every afternoon and then being awake until around 11 or 12, until I got tired again.

Now I’m just plain tired all the time, but can’t seem to sleep, even when that’s all I want to do. Before I couldn’t fight sleep off, now it can’t come quickly enough.

We have to talk…

I hate that phrase. It seems to me that whatever comes after that is never good.

But now that I’ve had that conversation with my boss, I think that was the first step to having conversations with others in my life that I’ve been putting off.

The truth takes time…

Clearly this is evidenced by how long it took me to finally make the commitment to really sitting someone down and making them aware of my illness. This wasn’t easy by any means, and there were times that I wanted to chicken out. I’m not sure I was 100% successful in this endeavor, but you have to start somewhere, right?

Every day I hear from one friend or another something that shows me that I am making strides in their understanding of my situation.

Some days it’s one step forward and two steps back, but that’s the way most, if not all things, in my life are working at the moment.

Work Day 2

Well, I’m tired, which is no surprise, but I’m alive, so that’s a good thing.

I never realized how exhausting it is to put in 8-hour days before.

Today was better than yesterday in terms of tiredness, but when I got home, I had no power. Now, I’m trying to learn to let things go and not stress about the little things, but the lack of power sort of put a damper on the things on my to-do list that I didn’t get done yesterday and had planned to get done today.

So, what’s a girl to do? Make a dozen and a half zucchini muffins, of course! Isn’t that what any girl with a gas stove and some time on her hands would do?

New Job + Exhaustion = Insurmountable Worry

I started my research internship today. It went fine, but, needless to say, I’m completely exhausted. I haven’t done this much activity in a long time. By the time I got home, I felt like my body was going to shatter into a million pieces.

I’ve realized that I can work through the pain. It’s the exhausti0n that is really debilitating. Well, actually, whether I can handle the pain vacillates on what seems like a daily basis. Today it was the fatigue that was really the problem.

And my advisor wants me to take a class. The class would be during work time, which is fine. But it meets everyday and I’m really worried about getting the work done, especially if I come home exhausted from work every night.

This brings me to the old question – who do I tell what? Do I admit that I’m worried about taking a class and explain everything that has been going on or do I attempt it and hope for the best?

It seems that every time I attempt to push myself to the limits (or what used to be my 95%), my body pushes back and reminds me that I’m no longer in control.

Career enrichment-wise, the class would be helpful, but body-wise, probably not so good. Today I felt the most stressed that I have in a long time and this was a relatively easy day.

And also, I’m trying to figure out when to pick up my prescriptions. It’s a matter of coordinating my work schedule and walking/bus/transportation, along with making sure that I actually get my medication before it runs out.

Not a big deal, but sort of.

I guess it’s not as simple as picking up and going. I can have the most ironclad plans, but that doesn’t mean that my pain or fatigue isn’t going to interfere with those plans.

Early this morning I was intending to stop by the grocery store to pick something up on my way home, but in the end, I was far too exhausted to make the effort.

And all I can keeping thinking is that every time I fail myself by not following through on something, even as small as going to the grocery store, inevitably, at some point, I will end up failing someone other than myself. And lately I’ve come accustomed to failing myself, but failing others is NOT who I am.