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.       

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,  

Taking A Vacation From My Vacation

That sounds totally weird, right?  Taking a vacation from a vacation.

But when you’re chronically ill, sometimes that has to happen.

I recently traveled to California, and upon returning to New York, I felt like I needed to recover.

Don’t get me wrong.  The vacation was great and very relaxed.

And yet, staying up for almost 24 hours between leaving New York and going to sleep in California, two-, six and a half hour flights, and a three hour time change, is a lot for my body to handle. 

Thankfully, I was with people who were more understanding than most.  We didn’t plan any activities that would be super strenuous or taxing, but I still needed to pace myself. 

Saturday afternoon I took a nap, which was much needed since we had plans in the evening.  Sunday we drove to Sonoma, so that was pretty relaxing.  And Monday we explored San Francisco. 

Lately, I’ve felt like I am flaring.  Like really.  Which hasn’t happened in a while.

I’ve been totally exhausted, to the point that I was when I first got sick.  I’m in a lot of pain.  And most recently, I’ve had the tell tale pain under my right rib. 

And I don’t want to blame it on vacation.  Because if you can’t sit back and relax when you are on vacation, when can you?

It seems like getting back into my daily routine of activity and commuting has hit me really hard.  I definitely needed a vacation from that – and in that respect – I don’t think my vacation was long enough.

In reality, vacation is a word I haven’t seen in a while, and it was a much needed break. 

But it has made me realize that I need to re-evaluate things.  I need to have a contingency plan.  I need to figure out how much vacation time I need after a vacation. 

Does it matter if it’s a car trip versus a train trip versus a plane trip? 

Does it matter if I end up in a different time zone? 

Does it matter if I’m traveling alone or with other people?

Again, don’t get me wrong.  The vacation was totally worth it.  We saw good people, ate good food, and soaked up some much needed sun that we hadn’t seen in about four months during the eternal winter we’ve been having.      

So if you’ve been wondering where I’ve been, blog-wise, I was on vacation, and then since then, I have been recovering from my vacation.

Traveling With Humira (I'm Back!!!)

First off, I want to apologize for my absence.  I have been traveling almost continuously for the past two weeks, and my computer has been in the shop.  I am finally back and also have my computer back, so I am just starting to play catch-up.

I had hoped to have this post up earlier, but decided that I should wait to post it until I was back and survived getting through airport security.    

I flew to New York with my boyfriend, and then we drove to Martha’s Vineyard, to spend some time with his family.  Then I traveled to Los Angeles to be a bridesmaid in one of my really good friends’ weddings. 

Before my Humira schedule had to be changed, I had lucked out that I wouldn’t need my injection while on either trip I took.  However, when it changed, it meant that I would have to travel with my pre-filled syringe to do my injection while I was out of town.

This is the first time I have traveled with anything injectable.  I usually have my meds (in pill form) with me, and I haven’t had problems getting my pills through security.  But at over $900 a dose, I couldn’t afford to take the chance of security not allowing me to take my Humira through. 

And it’s not just about the money.  A missed dose could significantly affect my health.

While some of the information for the TSA online is clear, I wanted to actually talk to someone, ask questions, and get verbal confirmation that I would be able to get through security with the medical supplies I needed. 

So I called TSA Cares, which is a hotline that has been set up by the TSA specifically to provide information for people with disabilities and medical conditions.

I called a week in advance, just to make sure that if I needed to get something specific that I didn’t have, that I would have time to get it.

The phone call was relatively short. 

My main concern was being able to have an ice pack, as Humira has to be kept cold.  And I wanted to make sure that I wouldn’t have problems getting the used syringe back through security on the way home, so I was told (and did) travel with a small sharps container.

My Humira starter kit came with a pouch with an ice pack, specifically for travel. 

For some reason, I have terrible luck with security.  So I wanted to make sure that I wasn’t going to have a problem getting my Humira through.

They told me that all medical stuff needed to be put in its own container at security, and that I needed to declare that, that container contained “medically necessary items.”

To be perfectly honest, even though I was told that I shouldn’t have a problem at security, I was really worried. 

Ironically, it was the smoothest TSA security experience I have had.  In Detroit, I noticed that there was a separate line for families and medical, so I got on that line.  When I got up to the agent, I told her that I had medically necessary items with me.  She told me that if I felt comfortable, I could take them out and declare them; otherwise I could ask for a bag check. 

Her reference/cognizance to my comfort really surprised me. 

Coming back from New York, I didn’t see a special line, so I just got in the regular one.  They did take the bin with my medical stuff away, but quickly brought it back, saying everything was fine.

I don’t know if calling ahead helped. 

Honestly, I was prepared for the fight of my life.  Because in the past, I’ve had less than ideal experiences. 

And the reality is, these people don’t care.  They probably have an associate’s degree, and it’s clear that the number one job qualification you need to work for the TSA is being an asshole.  I guess it comes with the territory.  But there is nothing that frustrates me more than innocent people being treated like criminals, and subjecting them to treatment that seems clearly in violation of civil rights. 

That was the horrific experience of Duncan Cross, in his recent post, TSAssaulted.  I love his post for the honesty, but his experience makes me so, so angry.  I have felt, ever since security became so tight, that they are more likely to disturb people that aren’t dangerous than they are the dangerous ones. 

The reality, though, is that this is real life.  You can’t dictate your medication schedule by your travel schedule.  You can’t not take your medication or leave behind any type of medical device that you need.  Regardless of your condition, this is a fact for those of us with chronic illnesses and/or disabilities.

Just because security is tight doesn’t mean you can leave your real life behind.  And living a life of chronic illness or disability is hard enough, without having to worry about TSA thugs.  I’m sorry, but that’s what they are.  You give people a little bit of power and they run with it.  But there’s one thing in this life I will fight for, aside from the people that I love, and that’s my health.  I feel like a lot of times our health winds up in the hands of idiots.  And that can be pretty scary. 

Don’t these people realize that our lives are difficult enough without them harassing us, without us having to explain everything?  And you can’t really get upset, because they might detain you, or at least show concern about how you’re acting.

To be honest, I was really worried.  I didn’t know if I would be able to keep my cool if they gave me a hard time.  I knew that having my boyfriend there as a buffer would be a good thing.  And I warned him that, under the best of circumstances, I’m not the best plane traveler.

The other thing I debated was to take one or both syringes.  Since this was the first in the monthly cycle, I had both of them.  I had nightmares that the cabin pressure would cause the syringe to explode.   

We flew to New York and then drove to Martha’s Vineyard.  I had planned to leave the Humira in New York and do the dose a day late when we got back, so that the Humira would only have to be out of the fridge once.  But in the end, I opted to take it with us to Martha’s Vineyard, and did my injection on my birthday no less. 

These were not ideal circumstances, and any number of things could have gone wrong. But again, we can’t suspend our illnesses just because they make life less convenient. 

And like I said, this was the most anticlimactic security experience I’ve had.  If calling ahead did help, because I can’t figure out anything else that would have, I strongly suggest you call ahead, too.    

I was ready to surrender my soul, but in the end, all I had to do was declare my items as medically necessary.    

If you have questions or concerns, you can call TSA Cares at 1-855-787-2227.

Better to be safe than sorry (pun intended). 

Don’t get me wrong, I don’t feel all warm and fuzzy toward the TSA, despite my good experience.  I feel better, a bit more confident as a traveler.  But I’m left wondering: They care?  They really, really care?

If going through the hotline really makes it easier for those of us with chronic illnesses and disabilities, I’m all for it.    

I had intended to get this post in for the travel themed edition of PFAM, which was hosted by Duncan Cross, but I didn’t make it on time.  So check out other travel experiences of people with chronic illnesses. 

Las Vegas Is Not For The Faint Of Heart Or Chronically Ill

I recently spent four days in Las Vegas.  I was there for an academic conference.  But since I had never been to Vegas before, I tried to have a bit of fun, as well.

There were two ways to treat this Vegas trip.  The first was like many of the blowhards who were attending the conference – to totally and completely hate Vegas without really experiencing it.  Or to go full tilt and experience Vegas, and love it or hate, but coming to that conclusion in an “educated” manner.

(I’ll admit that it was slightly ironic to be presenting about being chronically ill against the backdrop of a place that is so much the antithesis of that)

And then there’s the reality of my chronically ill life.

While I had fun, I paid a price.

There was a bit of drinking (not much by Vegas standards because my tolerance is low because I drink so rarely now; see picture at the end of this post) and gambling, a bit of hot pink feathered hair extension debauchery (good for the next three to six months; see picture at the beginning of this post (and I’ll admit, I’m totally digging it)), and overall, a bit of wearing scandalous clothes and impossibly high heels.  Throw in a Cirque show and some shopping, and you pretty much have a quintessential Vegas experience.  Tame by many standards.  Apparently, not tame enough for me, so my body now tells me.

But we’ve all got to let loose every once in a while, right? 

I learned an important lesson.  Vegas is not for me, and I suspect, not for many chronically ill people.

Vegas is just too much of everything. 

First off, everywhere you turn is another opportunity to be totally overstimulated.  It’s exhausting trying to keep up with the sights and the sounds and everything else. 

The heat was horrible.  The temperature averaged 105 degrees for each of the days I was there.  You would walk a block and be soaking with sweat, not to mention completely parched.  Although, for me, one unintended consequence is that the heat may have saved my joints from an even more untimely demise. 

Going outside to the heat and inside to the full blown air conditioning, and going to bed late made me feel completely run down and exhausted.  Not only was I eating at crazy times, but more healthful choices aren’t easy to come by in Sin City.  The portions were ginormous.  Honestly, I couldn’t wait to come home, and get back to real life.  I need consistency to stay as well as possible, and if Las Vegas is anything, it is definitely not consistent. 

I had overextended my hip a bit in kickboxing earlier last week, and as my time in Vegas progressed, it only got worse.  Las Vegas is a place where you can’t really avoid walking around.  And like everything else, the walking is just too much. 

I finally caved and took a Prednisone because the pain was wearing on me.  I was getting short with people, and I realized that it wasn’t something they could understand.  Unless you’ve experienced pain where you can literally feel bone grinding against bone, you can’t begin to imagine the wherewithal it takes to power through it. 

While the Prednisone greatly improved my hip pain, two days later, and I am already seeing the effects on my face.  The cystic acne is back.  And as much as it’s unsightly, it’s so painful.  This is just one reminder of why I hadn’t taken Prednisone in months before I took it the other day. 

I got some pretty severe blisters on the top of my feet from my shoes rubbing the wrong way walking through the airport.  I hoped maybe the Prednisone would aid in healing, but the blisters are open and raw.  It kind of looks like a dinosaur took a bite out of my foot.  And you know, maybe one did.  I’ll never tell.  What happens in Vegas, stays in Vegas.  Or so “they” say…

I guess it’s fitting that my return to Prednisone, even it was only a momentary lapse (I hope), happened in Vegas, because Vegas is life on steroids.

While “healthy” behavior is not espoused in Vegas, it’s clear to me that the smoke and heat and walking involved and the late nights are meant for a crowd who are “healthy” by “normal people” standards. 

The thing is, this whole experience brings up the fact that I’m 26 years.  Wanting to explore Vegas like other people my age isn’t so pie-in-the-sky.  But the reality is, by virtue of my illnesses, I have limitations.  And I definitely overdid things.  But it was hard not to.

For me, it was just too much.  I felt overwhelmed.  And now I feel pretty jetlagged and awful, and am trying to recover.  I also made the severe mistake of taking the red eye home.  It probably would have been fine if I wasn’t already exhausted, and then was put through the ringer by security.  I left Vegas at 11:15 p.m. Vegas time, 2:15 a.m. my time, and arrived in Detroit at 6:05 a.m.  The plane was cold, so I was pretty stiff and in pain by the end of the flight.    

I’m glad that my summer traveling is finally coming to an end.  I’m exhausted. 

So viva, LV NV!

Or maybe it’s more of ADIOS, LV NV.  I’ve had my fill, won’t be missing you, and probably won’t be coming back any time soon.  However, I will say that I could never really have fully understood what Las Vegas was actually like without experiencing it firsthand.  So I’m glad for that, and now it’s back to reality.