Monday, August 29, 2016

Body Shaming and Chronic Illness

One of the first things I heard when I started this illness journey was that my body was attacking itself.  And that rather than fighting off foreign invaders, my body was mistaking my own organs and joints as things that weren’t actually supposed to be there.

While that provides a somewhat easy explanation for a very complicated process of what’s going on, it’s a profoundly negative thing to be told.  And it sticks with you. 

We are told that our bodies are attacking themselves.  We are told that we must have done something along the way that caused this to happen. 

I’ve never been the most confident person in the world.  I’ve been self-conscious most of my life.  And THEN I got sick.    

But with all of this stuff going on, I never really had to worry about my weight.  If anything, I had to be worried about being underweight.  And then, slowly, my weight crept up.

I felt like I was stuck in a rut.  While I used to look at some pictures of me in high school and think I was chubby, I know now that I really wasn’t.  And I was so fixated on gaining the “Freshman 15” in college that I inadvertently lost 15 pounds.    

At my lowest since high school, when I first went to my rheumatologist, I weighed in at 86 pounds.  I know now that, that definitely wasn’t healthy.  And part of my lack of eating was the amount of pain I was in.  That had a lot to do with it.  It wasn’t that, that was my goal all along, to weigh 86 pounds.  And until about five years ago, I never topped out at more than 98 pounds.  Then things changed.  And the number kept going up and up.  When I went to the doctor in February, I weighed in at 121 pounds.  It was the most I have ever weighed in my whole life, and I was completely disgusted with myself.    

That number on the scale was the kick in the pants that I needed to do something about it.  And it wasn’t just the number on the scale.  It was the way I felt.  It was the fact that I could barely look in the mirror let alone consider letting another human being see me without clothes on.  No one in my life was explicitly telling me that I was fat, but I could tell by some of the looks I got that people thought I had gained weight, and I had.  This doesn’t really hit you until you start losing weight and people tell you how great you look.    

So in June, I joined Weight Watchers.  It’s not so much that I wanted to diet, as much as whatever I was doing myself – mainly eating as many carbs and as few fruits and vegetables as possible – wasn’t working.  Sure, it didn’t help that eight years ago I got sick, two years ago my dad died, eight months ago I lost my job and my boyfriend of three and a half years broke up with me, and I moved back to Michigan; jobless, boyfriend-less, and otherwise confused about where my life was headed.  Who would blame me if pizza became my go-to food? 

But I’ve had to do something, and I’ve tried to look at this whole experience as more of a lifestyle change than a diet. 

But I assure you, there is no judgment towards other people.  I know some people I have talked to have looked at me and said “I would kill to weigh what you weighed at your highest.”  But that’s not what it’s about.  It’s about the fact that I didn’t feel like I looked good, and I didn’t feel good, physically or emotionally.  That extra weight was literally and figuratively weighing me down.  

But slowly, I’m working on turning my negative self-talk into positive self-talk.  I can actually look at myself in the mirror again, and shocker, kind of like what I see.  I’ve lost almost 13 pounds, which puts me almost at the high end of my goal.  I know 13 pounds isn’t a lot, but it is for me.  It’s actually 10% of my starting weight.  But honestly, and I keep having to tell myself this – the pounds don’t matter, the percentage doesn’t matter, as much as how I feel, physically and emotionally, matters.    

I hate when my rheumatologist asks me if I’m exercising.  Because it’s not code for “are you moving enough?”  It’s code for “get off your butt and move, you fat ass”.  Trust me, I’ve known him long enough to know that, that’s exactly what he’s saying.  And rather than retort back, “And what’s your excuse?” I smile and nod, and pretend that what he said hasn’t hurt me at all, when clearly, it has. 

I don’t think I’ll ever hit below the 100 pound mark again, but who am I kidding?  I’m 31 years old.  It’s not as easy as it used to be.  Seriously, at 25, it all started going downhill. 

So from the very beginning of our illness journeys, we are fed information about our bodies that our profoundly negative.  And we are expected, despite the pain, despite the stiffness, despite the medications and their side effects, despite whatever else in life might happen besides our illnesses, to rise above, and do it with a smile and all while looking great, all like you would never know we were sick.    

Wednesday, August 24, 2016

That Time I Got Manhandled By A Phlebotomist

The scene of the crime...
Having dealt with chronic illness for over eight years, you would think by now that I wouldn’t get phased by blood draws. 

But I recently had a particularly bad one that was enough to put me off of it for a while. 

Apparently, when I saw my rheumatologist at the University of Michigan Hospital at the beginning of August, the lab there did not do all the tests that my doctor ordered.  I’m not sure how that is possible since it was all sent electronically, but they didn’t.  I was also told that because of one of the medications I’m on, I have to get my blood drawn every other month, even though I didn’t have to do this with my last doctor, who was the one that put me on the medication. 

So in order to get the rest of the labs done and set up the standing order, I went to the lab at a local hospital near me, as it’s not realistic for me to go all the way to Ann Arbor just for a blood draw. 

I expected that this would be a routine blood draw, but not so.  (And by routine, I mean I know that I am a hard stick) 

The first phlebotomist spent about 10 minutes feeling around for veins in both arms.  That was a red flag to me.  I would much rather have had this person feel around and then give up, rather than try twice and fail miserably. 

The first time she tried, she got the needle in and proceeded to move it around.  Like really move it around, to the point where I was ready to scream, to the point where I thought if it was possible for the needle to come out the other side of my arm, it would.  Finally, she pulled the needle out.  But I’m not really sure why she couldn’t get blood from that area because of the amount of blood that proceeded to flow from my arm when she took the needle out.  

Then she asked if she could draw from my hand.  If you stick a needle in me and draw blood from my hand, fine, but if you stick a needle in my hand and get nothing, we definitely are not friends. 

After that, she said she would get someone else.  Yeah, good idea lady. 

The second person came in.  She asked where they normally draw blood from and I showed her the same spot that I showed the first woman, who opted to do her own thing.  The second woman went in the spot I showed her, and sure enough, blood came out, albeit slowly.  She asked me if I drank water.  I told her that if it was about how much water I drank that day, the blood should be flowing out of me. 

And we won’t even talk about the fact that they started decanting the blood into vials and the second woman proceeded to get my blood everywhere.  Well, we will talk about it because it sucks.  It took hard work to get that blood and then you go ahead and spill it all over the place?      

The second person asked if I was okay and needed juice.  I replied that I was fine and didn’t need juice. 

But in reality, I wasn’t fine.  I left the lab pissed off and frustrated.  I didn’t need juice.  I needed a break.  I needed to get out of there. 

I need to escape from the monotony of it all.  Actually, it’s not monotonous.  It’s always an adventure, and that’s what really gets old about it.  In reality, the routine is for nothing to actually be routine or ever go as it should.

And this situation was just too much.     

It feels like a profound violation.  Normal, healthy people don’t allow things like this to happen to them.  But as a sick person, I’m supposed to sit there and take it.  Without question.  Without argument.  And definitely without anger or frustration. 

Is there a glamorous side to chronic illness?  Some people try to find it.  But right now, I’m not seeing it.  I didn’t sit there with a smile on my face despite the pain.  I bit my lip and gritted my teeth.  But more than anything, I wanted to punch the phlebotomist in the face.  I wanted to pull the needle out myself and tell her I was done.  I wanted to walk away.  I wanted to call my rheumatologist’s office and tell them why I was choosing to be “non-compliant”, and why they can’t make me get my blood drawn, even if they threaten to take my medication away. 

The reality is, all of these small violations take their toll.  I am used to being stuck multiple times per blood draw, I am used to bruising after a blood draw, I am used to lab techs saying stupid things to me, like telling me that I have to put my arm out straighter even though I have arthritis and cannot physically accommodate that request. 

But when all of those things happen at once, when I am attempting to do my duty as the dutiful patient, and it all goes horribly wrong, it’s just too much. 

So yesterday’s anger and frustration has transferred to today.  And so I’m writing the shit out of this experience because I don’t want to stay angry.  I know that there are bumps in the road.  I know that some days are easier than others.  And yesterday was a bad day.  My body reminds me almost daily that I’m sick.  So these not-so-subtle reminders that I truly am sick are sometimes just too much.    

Maybe the bruises on the outside show a fraction of the physical pain I feel on a daily basis and the emotional pain that sometimes occurs as a result. 

I wish I could say that I got in a fight.  I wish I could say, “You should see the other guy”.  But the other guy doesn’t care.  The other guy has education and training to draw blood.  But even I can stick a needle in myself and get nothing out.  Maybe I should learn how to draw blood.  Is it possible to draw your own blood?  If so, I’d probably have about the same success rate at the phlebotomist who manhandled me.  But at least I’d be doing it to myself and not allowing someone else to do it to me.   

Wednesday, August 3, 2016

Self Care = Must Care

I have never been the poster child for self-care.  I say “yes” to too many things, I don’t say “no” often enough, and I must confess, I haven’t been to a rheumatologist since before I moved back to Michigan from New York.  It’s probably been at least eight months. 

I had to be on call for work for the first time.  It was hell.  Starting on a Monday, I was on call from 5:00 p.m. to 12:00 a.m., then on again from 5:00 a.m. to 8:30 a.m. during the week, just in time to go to work, and the cycle repeated itself.  On the weekend, I was on from 5:00 a.m. to 12:00 a.m.  This was for an entire week.  And by the end, I was flaring for the first time in years. 

For at least two weeks after, I was on a downward spiral. 

Then…I went to Miami for a Pharma event…

Physically and emotionally, I was really in no condition to go.  But I didn’t feel like it was appropriate to let the organizers know on Thursday that I wouldn’t be able to attend something that began on Friday.  Next time, I will trust my intuition, and cancel, even at the last minute if I have to.

There were a lot of issues, and I didn’t stand up for my needs:

1)      I had a very early flight out on Friday morning – meaning that I had to get up at 4:00 a.m. to get to the airport. 
2)     I was basically only supposed to be in Miami for 36 hours and was supposed to fly back to Michigan on Saturday.
3)     The heat and humidity in Miami was terrible.  If I wasn’t flaring before the trip – which I definitely was – I was definitely flaring after. 

But wait, there’s more…

The gate for my return flight was changed four times.  I ran through the airport, which is comical because I cannot run.  And literally could not breathe after the first gate change.  My flight was delayed for three hours and was ultimately canceled.  I spent the night in the Miami airport.  I didn’t sleep.  I spent six hours standing and waiting in line to attempt to talk to someone from customer service at American Airlines.

I rebooked my flight over the phone, but the options were less than ideal:

1)      Wait a full 24 hours and fly out on the same flight I was scheduled for originally, but the next night – No way was I taking a chance of getting stuck in the Miami airport for another night.
2)     Leave Miami at 7:00 a.m. Sunday, take a plane to Charlotte than a flight to JFK and then arrive in Detroit at around 4:00 p.m. – I not very calmly explained to the person on the phone that I have lupus and RA and there was absolutely no way that I could navigate multiple airports in the condition I was in, and that was before standing in line for six hours.
3)     Leave Miami at 8:00 a.m., fly to Philadelphia with an hour to make the connecting flight, and arrive in Detroit around 1:00 p.m. – I ended up booking this flight, but realized that there was a high likelihood I would miss my connecting flight

Ultimately, I ended up booking a flight Sunday morning on Delta.  I had to wait until security opened and then had to walk all the way to another terminal.  I was planning on asking for some sort of transportation when I got up to the customer service desk for American Airlines, but that never happened.  I had to make the choice, being five people from the front of the line, of waiting in line and taking the risk of missing my Delta flight, or getting out of line to make the trek to the other terminal without ever having talked to anyone from American Airlines. 

That Monday, I didn’t go to work.  I could barely walk. 

I swear, I recovered just in time to take a work trip to Boston. 

I’m starting to understand that taking care of myself isn’t always going to be the popular choice or make other people happy.  Some people might even feel inconvenienced or disappointed.  But if I’m going to be successful at anything in my life, I need to take care of myself, first and foremost. 

I’m learning that doing me is more important.  This is hard for me because I feel like I have totally fallen off of the blogging and advocacy bandwagon.  But after putting my body through so much, I’ve had to try and take it easy as much as possible.  It’s hard for me to slow down, but my body has forced me to do so. 

Hopefully if there’s anything I take away from these experiences, it’s to know my limits beforehand and avoid situations like this altogether, if at all possible.  I know that taking the earliest flight out and latest flight back makes no sense for me.  I know that having a turnaround time of less than a day doesn’t work.  I know what I can handle.  I know what is realistic, and in the last several months, I have put myself in completely unrealistic situations.  I have set myself up to fail.  I have to care about myself more and love myself enough to have the confidence in making decisions that are right for me.  Because if I don’t look out for myself, no one else will look out for me.       


TrialReach Clinical Trial Search

I wanted to make you all aware of a really cool widget called the TrialReach Clinical Trial Search widget.  Because of the size of the widget, I was not able to include it in the sidebar, so I have included it as its own tab below the header of my blog.  

I know that often times patients are interested in getting involved in clinical trials, but have absolutely no idea how to find them.  This widget allows you to search for clinical trials in your area by searching your condition, entering your zip code, distance from you, your age and sex.  You can do all of that within the widget.  It will not navigate away from my blog until it shows you a list of results, which you can explore to see if you qualify.   

If you are interested in participating in clinical trials, I highly recommend using this as a resource.  


Monday, July 11, 2016

Product Review: Mo’s Dream Cream

** I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. **


I’ve fallen off the blogging bandwagon, but I’m back, and my first post in is a product review that I wanted to share with you.

I love trying new products, especially those that are thought up by those with chronic illnesses in an effort to help and improve the lives of others with chronic illnesses.   

I recently had the opportunity to try Mo’s Dream Cream and No Mo Pain Stick.  The key to this is that the product is all natural and the main ingredient is capsaicin paste. 

I have heard of capsaicin before, but have never tried anything that contains it. 

According to Keri, the creator of Mo’s Dream Cream, arthritis pain relief can occur in five minutes and can last for six to eight hours, and sometimes longer.    

I’ll admit, I was skeptical about this product.  I have used other pain relieving gels and creams with varying levels of success.  I was also skeptical because I thought, “Fermented cayenne pepper is going to help my pain?  Yeah right.” 

So imagine my surprise, when after using Mo’s Dream Cream, my pain was greatly improved in a very short amount of time.  I spot used Mo’s Dream Cream against another pain relieving product that I used as a test to see which worked better.  And I didn’t test it on just any “normal” pain for me.  I tested it when I was in a full-on flare.

And it worked!  I mean, really.

I feel that the lotion was more effective than the stick.  However, I love the stick because it is portable, and you don’t have to worry about getting it all over the place.

Because it’s all natural, I suppose you can use it over larger areas of your body.  But being used to using products that aren’t all natural, I haven’t tried using it much more than on spots that are especially sore.

To me, the only downside is the smell.  It takes a bit of getting used to, and as a result of my lupus, I am very sensitive to smell.  You can smell the lotion through the bottle, but once I had it on, after a while, the smell didn’t bother me anymore.  I found that the smell of the stick was a bit more palatable, although it’s still a pretty strong smell.  I will say, however, that all of the other pain relieving products I have tried do have pretty strong smells, it’s just not a smell that I’m used to.

If you have sensitive skin, you may want to spot test to make sure that you don’t have a reaction.  I have sensitive skin, but I didn’t have any problems in this regard.  I was also worried that the lotion might burn.  It didn’t. 

The only caution is that you must wash your hands after using the lotion because it does have cayenne pepper in it, and there are certain places you don’t want cayenne pepper to go – your eyes, etc., you get the picture.  Common sense, but I’ll say it anyway.    

To learn more or to purchase Mo’s Dream Cream, visit https://squareup.com/store/modreamcream.  The lotion costs $20 a bottle and the stick costs $15.

And if you decide to purchase Mo’s Dream Cream or the No Mo Pain Stick, you can use the promotion code LESLIE4U that Keri has generously created specifically for my readers.  This will give you 10% off all products.  And it never expires!  

Wednesday, May 4, 2016

Blogging And Cyberbullying

I have been blogging for over eight years now.  I’ve had my fair share of negative comments and people disagreeing with me over things that I have written.  That doesn’t bother me.  Just as I have the freedom to say what I want, so do other people. 

And this has never been a problem.  Until now.

But what I have experienced over the last several months goes beyond negative comments and criticism.  These comments hit below the belt, and quite frankly, they are not true.  And they make me sick.    


I can’t imagine that anyone in the chronic illness communities I am a part of would make comments like these.  They would simply not comment or stop reading my blog.  In the eight years that I’ve been blogging, I have never received malicious comments.

I have a pretty good idea about who is making these comments because they mirror things that have been said in the past in other venues (which I have evidence of, as well).  My blog is also the only possible way that this person could get to me at this point.  And it needs to stop.  I went quietly, so it’s time for them to get over it.  It’s time for them to stop projecting their own insecurities onto me.  It’s time to grow up.  And it’s time to leave me alone.   

Because if this continues, there will be consequences.  I have already contacted Google about this, and am working on tracking the IP address to prove that the person who I think is posting these comments is indeed the person that is. 

Negative comments are one thing.  Slanderous comments that call my character into question are quite another, and this is not okay. 

Cyberbullying is real.  And I fear that as bloggers, this is something that we might all face at one time or another.  I never really imagined that anyone would post such nasty comments on my blog, but there are people in this world who thrive on trying to tear other people down.

But I won’t be torn down.  I’m fighting back, and this is the first step in that fight. 

Comments such as these are not okay under any circumstances.  And honestly, if you are going to write comments like this, at least have the courage not to stand behind the veil of anonymity.  Because you’re not really anonymous.  I know exactly who you are and I’m going to prove it. 

Cyberbullying is a crime, and is punishable by law.  So whoever is doing this, for your own sake, stop.  It’s not really worth getting in trouble over.  Worry about your own life, and let me worry about mine.    

Monday, April 25, 2016

Deeply Rooted Connections*


Last weekend, I had the opportunity to travel to Chicago to attend HealtheVoices 2016.  This year, the conference was put on by Janssen, as it was last year, but this year included the addition of Everyday Health.  The unique thing about this particular conference is that it brings together online health advocates who have a variety of health conditions. 

The theme of this year’s conference was “deeply rooted connections” and this was seemed particularly appropriate to me. 

The conference coincided with a major milestone for me.  I’ve been blogging for eight years.  That’s so crazy!  I can’t even believe it.  I wrote my first blog post on April 17, 2008.  I didn’t even really know what a blog was.  All I knew is that I felt totally alone, and confused, and I needed a way to process all that was going on.  The conference really reminded me of where I’ve come from, where I’m going, and why I do what I do. 

I was so inspired by the other amazing health advocates at the conference.  I learned about legal issues as they relate to blogging, and the importance of taking care of ourselves, avoiding compassion fatigue, while also attempting to take care of others. 

I got to see some old friends and got to make some new friends.  I love how when we all get together, we can act silly, while also understanding the difficulties that we experience living with chronic, incurable illnesses; and the impact that traveling and being in unfamiliar environments can have on our health.

I think that a conference like HealtheVoices forces us out of our comfort zone.  It makes us move beyond our own silos.  But it also reinforces that while we may have different diseases, much of our experiences that we have as chronically ill people are the same. 

One of my fellow advocates at the conference made a comment that when she was searching for support for her disease, she found it through other blogs, which she called “hope with skin on it.”  That really resonated with me.  I really hope that this blog has brought hope to others with lupus and rheumatoid arthritis, and to those with other chronic illnesses, as well.    

I started this blog eight years ago as a way to keep my family and friends updated on my complicated, ever-changing medical situation.  It was exhausting to rehash the same story over and over again.  And quite frankly, it was often easier to write about it than it was to talk about it.
 
But what started as a way to keep people updated, turned into something so much more than I could have ever imagined. 

I am so grateful for all of the amazing opportunities that have come my way as a result of this blog.  And I am so grateful for the amazing people I have met, and even more grateful to the ones I can now call my friends.  These deeply rooted connections are the most important thing that this blog has fostered, and I truly don’t know where I would be without them. 

So thank you.  Thank you to Janssen and Everyday Health for allowing me to be a part of HealtheVoices 2016.  Thank you to all of my readers who have been there along the way, who have supported me, and who have celebrated the triumphs and mourned the tragedies.  This blog would be nothing without its readers.  And it still amazes me that there are people other than my mom that read this blog.

So I’ll keep writing, even if it is not as often as I would like, and I urge you to please keep reading.  Please continue to follow my journey, and hopefully you will learn and gain something along the way.     

* Janssen paid for my travel expenses, but all of the opinions expressed here are my own.  

Thursday, April 14, 2016

Product Review: Pill Suite

Disclosure:

**I have been given this product as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. *

There are all kinds of pill cases on the market, and many of us with chronic illnesses that take multiple medications struggle with how best to store them.  One alternative is the Pill Suite.  The Pill Suite allows you to individually package your medications for single, one-time use. 

Basically, the system consists of a pill case that you can divide your pills into.  You then turn the funnel so that each divided section goes into its own “suite” (bag).  Once the bag is filled with the pills, you put it under the sealer, hit the button for a few seconds, and it heat seals the bag so your pills are safe and secure.  Each “suite” is one-time use only.  Once you’ve opened it, you cannot reseal it. 

The bags aren’t the best quality, and I sometimes struggled to rip them off without ripping off the part of the bag that is needed to open the bag once it is sealed.  If you do it very carefully, you can get the bag off in one piece. 

For me, personally, I can’t see using this every day.  This system is convenient if transporting medication bottles and a weekly pill organizer isn’t practical.  I guess for some people, that’s never practical and this system is perfect for those people, who may take so many medications that they don’t fit in any standard pill case.

The other issue I had is that the button on the sealer is made of very hard plastic, and even though you have to press it for just a few seconds, it’s not totally arthritis friendly.  So this is another reason why I can’t see using this all time.  But if your fingers/hands don’t give you trouble, then this really isn’t a consideration for you.        

In order to give the product a fair try, as an experiment, I doled out my pills for an entire week.  It took me probably at least three times the amount of time it would take me to dole out my pills for the week into a standard pill container.  I actually have a weekly pill organizer that I really like, but I know that there are people chronically searching for a weekly pill organizer and they never find one that they like.  So maybe a system like this is perfect for someone like that. 



I will say, it was kind of nice that all of my pills fit into a sandwich-size Ziploc bag.  It was much flatter than a normal pill case.  However, it took a bit of searching to make sure that I was picking the correctly labeled suite.  And if I would have happened to forget to take a dose, I might not have noticed as easily as when my pills are organized in a pill case. 

When traveling, I often struggle with how best to transport my meds, and this system would definitely be ideal for trips.  This system is also useful if you want to carry a “spare” set of pills with you at all times, and you want a very compact way to do that.  I can definitely see using this for travel.

You can write on the bags – best to do that when they are empty – and this allows you to customize them however you want. I needed to have two bags per day, one for morning meds and one for night meds. 

Some of you may have heard of Pill Pack, which is a system that allows you to get your pills pre-packaged for you into single serve pouches, similar to the ones that come with the Pill Suite.  If you like the idea of Pill Pack, but your pills change too frequently for you to take advantage of that, the Pill Suite is great because it’s the same concept but you can do it on your own, even when your pills change.   

Again, for me I think this is a great solution for traveling with medication.  I personally wouldn’t use it every day, but the reasons that hold for me might not hold for others.  So if you’ve been looking for an alternative to the traditional, bulky, plastic pill cases, this might be the perfect system for you. 

The Pill Suite system comes with the pill case that allows you to funnel your meds into the bags, the sealer, 400 “suites” (bags), and four AA batteries.

For more information, visit www.pillsuite.com,  





Tuesday, April 5, 2016

When A Friend Dies

A few weeks ago, I was perusing Facebook when I discovered that one of my friends from New York had passed away.  I spent the whole weekend feeling awful.  Even though I have experienced loss before, it doesn’t get easier.  It doesn’t make sense when a 42-year-old who was so full of laughter and life is brought down by a disease just eight months after she was diagnosed with it. 

This is the person who I was hired in to replace for part of the time that she was sick.  I remember getting the call that they wanted me to come back to work because she was sick.  At the time, no one was sure what was wrong with her.  At first, it seemed like an acute problem.  I went back to work thinking I would be there for a few weeks, but I ended up being there for six months, and as it turns out, she was never able to return to work.  Because ultimately, it wasn’t an acute illness.  She was diagnosed with glioblastoma, an aggressive form of brain cancer that is almost always caught at stage 4.  I know a bit about this because one of my cousins died from it.  The median survival rate at five years is 4%, pretty terrible odds regardless of how you look at it.  But this person wasn’t living in absolutes.  She truly believed that she would beat the disease, and because she believed it, I wanted to believe it, too. 

I felt a bit awkward because, while I was glad to go back to work, I didn’t like the circumstances that led to it.  In some ways, I felt guilty.  It almost made me feel like I was capitalizing on someone else’s misfortune.  But I remember when my friend heard that I had been brought back on, she was so happy for me, and she was also happy that she knew someone competent would be there in her place and she wouldn’t have to worry.  In her time of need, she was happy for me.

The last time I saw her, she was bloated from steroids and was wearing a wig to hide the hair she had lost from chemo.  But she was in good spirits and truly believed that she was going to beat it. 

In some ways, I feel a little odd sharing this because it’s not my news to share or cross to bear, but I feel compelled.  I feel compelled because this person, in the darkest time in her life, held on to something that made her have hope.  If having hope and a positive attitude could cure, she wouldn’t have died.  But that’s not how life works. 

I knew this person for just a year and a half.  I wasn’t a relative, and I wasn’t one of her friends that had been in her life for decades.   But our paths had crossed, and my life was better for having her in it.   

Because she was Jewish and funerals have to happen within 72-hours of death, I wasn’t able to go back to New York to attend the funeral.  I feel badly about that. 

As a chronically ill person, I am acutely aware of my own mortality.  I know that some people who are sick, die.  But even though I know of the possibility of death, it doesn’t make it any easier when it happens. 

This person introduced me to Stitch Fix and we helped each other decorate our apartments, my new apartment and her apartment that was newly renovated.  She was one of those people that always looked put together, but she wasn’t pretentious about it. 

She was a New York girl to the max.  But even so, we bonded.  We connected.
That accent though.  Pretty much everything you might imagine in a native New Yorker she embodied, except that she had a heart of gold and a sense of humor that was unmatched. 

I’m privileged to have been able to call this person my colleague and friend.  And I’m sad that life circumstances put me in the position of not knowing exactly how she was doing until I learned that she had died.  Sometimes, no news is good news, but sometimes it’s not. 

I’m not sharing this because I want sympathy, and when I shared it on Facebook and people sent their condolences to me, I felt like I didn’t deserve it.  This wasn’t about me; it was about her and what a wonderful person she was.   

I hope she knew how many lives she touched, and that everyone she came in contact with was better for having known her, if only for a brief time. 

Rest in Peace, Deb!  Thanks for being one of a few good memories I have from New York. 

Tuesday, March 22, 2016

Moving Forward And Falling Behind

Sometimes my life feels like I’m in a constant state of taking two steps forward and one step back.  And maybe I am.

Just a few months ago, my whole world fell apart for the third time.  The first time was getting sick.  The second time was my dad dying.  And the third was that I lost my job, my boyfriend and I parted ways, and I moved back to Michigan, all in the span of less than a month.  I had no job, no man, no car or driver’s license, no place of my own.  Thankfully, my family and friends have been there for me, but there’s only so much they can do.  Everything else falls on me.    

Oddly, though, my boyfriend and I breaking up didn’t gut me.  At one time, it would have.  It was more everything happening all at once.  I am still struggling with it, to be sure, but I am not a depressed blob of a person that is unable to function on my own.  And I think this is because I have suffered far more horrible losses. 

Like when my dad died almost two years ago.  Or like the friend that I recently lost to cancer.  Losing someone somewhat voluntarily (i.e. a breakup) is so much different than losing someone in a way that one day they are there and the next they are gone forever.  Because in reality, if I really felt compelled, I could contact my ex-boyfriend, or if he felt compelled, he could contact me.  But I will never have another conversation with my dad.  I can’t call him and talk to him, no matter how much I want to.    

And as I think back to my ex-boyfriend and I, I don’t think I lost him when we broke up.  I didn’t lose him then, he was already gone.    

I’m feeling really frustrated lately that I always have to be the bigger person.  Even when I have been wronged, I have to be the one to act like everything is okay.  I shouldn’t have to be forced to break bread with people that I can’t stand to be around.  I know that life is too short to hold grudges, but sometimes people don’t just get along.  So while part of me wants to take the high road, part of me just wants to lay low, protect myself, and forget about the rest. 

So my life is, albeit slowly, moving forward.

Now, I have a job that I really enjoy.  I am working on driving.  I am in the preliminary stages of looking for an apartment.

And yet, I want more.

Several of my close friends are having babies, and several of my chronic illness blogger peeps are also having babies.  So I’ll admit, I’m kind of jealous. 

In my last relationship, I think that one way I went wrong is that in the back of my mind, I always had a timeline.  So if I was 26 when we met and we date for two years, and then we are engaged for a year, and then we are married for a year, and then we spend a year trying to get pregnant, and then we have a baby…And then the fear becomes reality because now I’m 30 and single.  I’m 30 and totally not where I want to be. 

But I’m not ready to date again.  Right now, of everything I have to do, it’s honestly the last thing on my list.  I don’t want to be alone forever, and that’s definitely a fear that I have.  But I also need some time to get back to myself.  I need to be totally self-sufficient again before I can consider relying on someone else.   

I don’t always want to be a person who wishes for a life that they don’t have.  I just want to be happy.  And I know that before someone else can make me happy, I need to make my own happy.  So that’s what I’m working on right now.  Making my own happy.

And of course, chronic illness fits into this.  I’ve been working on some diet changes, and trying to learn how to balance my first real full-time job with having lupus and RA.  And I haven’t actually disclosed to most of my coworkers that I am sick.  So that’s something else I have to work on.

There’s a lot I have to work on.  And I’m trying my best to see the forest through the trees.  I’m trying to convince myself that I have time, even though I sometimes worry that I don’t.  I’m trying to remain optimistic, and to tell myself that just because I’m sick, doesn’t mean I can’t have the life I want.  

Wednesday, March 2, 2016

CVS Pharmacy, We Have A Problem

Dear CVS,

I recently had a very frustrating and disconcerting experience at the pharmacy at store #8106.

On Sunday, I called in three prescriptions for refill.  When my mom went and picked them up on Monday, there were only two.  I assumed that I must have accidentally forgotten to call the third one in, so on Monday night, I called in the missing prescription (again!). On Tuesday, when I went to pick it up, I was told there was nothing ready for me. 

I was then told that my insurance was refusing to cover it and that is why it hadn’t been filled.   I agreed to pay for it out-of-pocket because as of Tuesday, I was out of the medication. 

Then, I was told that they would not be able to fill it right away and I would have to come back two and a half hours later. 

I left CVS and called my insurance company asking for an explanation as to why they wouldn’t cover it.  Because it had been covered the month before by a lesser insurance, they decided to give me an override and will cover the medication for a year.  They called the pharmacy and informed them of that.  I thought that’s where the problem ended.  But I was wrong.    

When I went back to CVS, they went to get the prescription for me and they couldn’t find it.  They knew they had filled it.  After 10 minutes, they finally decided to fill it (again!).  And imagine, this only took about five minutes, so it is unclear to me why it took them over two hours to do the same thing the first time. 

As I’ve continued to stew about the incident and the incompetence of the staff, I have come upon a greater concern.  Did someone else end up with my medication?  Has a violation of HIPAA occurred?  The prescription that they claim to have filled was not found while I was in the store, and it’s unclear whether it was found at all. 

I have experienced nothing but problems with this particular pharmacy and its staff.  Right now, I know I will be pulling my prescriptions from this location and am still trying to decided whether I will take my prescriptions to another CVS equidistant to my house, or will take them to a different pharmacy altogether.

Rarely have I experienced such incompetence at a pharmacy, and I am chronically ill, so I have had a lot of experience with pharmacies.  And never before have I been concerned that my protected health information has been compromised.  This is totally unacceptable. 

I want CVS to launch a full investigation into this matter, and I need to know exactly what happened to the prescription that was supposedly filled and then went missing. 

Sincerely,

Leslie Rott

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…