Tuesday, April 15, 2014

My Post-Steroid Life: Stretch Mark Cream And Strap-On Ice Packs

Sounds sexy, right? 

Sometimes RA is so sexy…and soul-crushing.

I’ve been off of steroids for about two months now.  And it has been a struggle.  But I am determined not to go back on them for a long, long time.

Being on steroids is a pain (figuratively).

And being off of steroids is a pain (literally). 

For me, being off of steroids means that I have a significant increase in pain and swelling, especially in my knees and feet.

I haven’t really found a way to deal with the feet pain.  It’s pretty insidious when the bones in your feet hurt. 

For my knee pain, I was really excited to find an ice pack that actually “straps on” with Velcro.  It’s great because I can wear it at night and not worry about it falling off.

Oh, the simple things in life.  Who would have ever thought that an ice pack would be so exciting?    

The other issue I had during this round of steroids, while on Methylprednisolone, which I never had when I was on Prednisone, is that I have stretch marks on my sides and on my under arms just above my armpits. 

Apparently this is something that can happen.  Although, like I say, it has never happened to me before.  It’s also troublesome because I didn’t gain the amount of weight while on steroids that you suspect would cause stretch marks.

They don’t hurt or anything, but they are totally unsightly and embarrassing; luckily they are mostly unseen, although I am constantly aware that they are there. 

I got some stretch mark cream, which seems to be lightening them up a bit, but seems like a product I shouldn’t need at this point in my life.


One thing I do miss about steroids is that they make my shoulders feel so much looser and lighter, like an unbearable weight has been lifted off of them.      

But I obviously don’t miss all of the pesky side effects, and even though I am off of them, I am still trying to get rid of the side effects. 

The whole steroid thing is something that I really struggle with.  Of course I would rather not be in pain than be in pain, if I had a choice.  But sometimes, steroids just feel like more work than they’re worth.

I recently met several women in their 20s who have had to have full hip replacements due to being on chronically high doses of steroids.  This is definitely not worth it to me. 
The prospect of a hip replacement does not thrill me at all.

So I’m going to try and stay off of steroids for as long as I can.  And I’m going to try and complain to a minimal degree while I’m off of them.     

But the reality is, I have seen my body change in myriad ways over the past six years that I have been sick.  And I think it’s a really difficult aspect of being chronically ill that you don’t have control over.  Your body changes – whether from the ravages of the disease, medication side effects, or many other reasons – and you’re helpless to stop it from happening.  You have to sit back and watch it happen.  And so do the people around you. 

When I first got sick, I was so ill, that I would have done anything to get better.  And I have made concessions along the way in terms of telling myself I would never give myself injections to then getting to the point where I did give myself injections.

But I am still on the fence when it comes to steroids.  I’ve made concessions and have gone back on them when I didn’t want to, but they will never be a permanent solution for me.  Finding that permanent solution is something I’m not sure I will ever find.     

Sometimes I feel like when you’re chronically ill, it’s expected that you’ll evolve and not worry about superficial aspects of yourself.  Like if steroids are helping my pain, I shouldn’t be worried or annoyed that I’ve gained weight and feel fat. 

But the truth is, one of the most stunning aspects of being chronically ill is looking in the mirror and not recognizing the person that is staring back at you, whether the lack of recognition is due to literal or figurative changes.

I try to be realistic about my situation.  I try to focus on the positive.  And I try to cut myself some slack when my illnesses or medications change my body.  But sometimes it’s more frustrating than being in (literal) pain.   

Monday, April 7, 2014

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.

Friday, March 21, 2014

My ID Square*

Today I am reviewing a medical alert product called My ID Square. 
  
I think that medical alert bracelets and other jewelry are essential for people with complicated medical issues.  I was first interested in such products when I was teaching and worried that if I wasn’t with someone who knew me, I needed something that would, in effect, speak for me if I could not communicate on my own, in a medical crisis or other type of an emergency.

I have tried many types of medical alert jewelry that are available, so I am excited that I am getting to try the My ID Square and adding it to my repertoire.

SquID squares (shown here), which can be attached to bracelets or necklaces, cost $47, which provides a lifetime subscription to the Emergency Medical Profile.  Squid Tags (dog tags) are $44, and also come with a lifetime subscription to the Emergency Medical Profile.     



In the Emergency Medical Profile, you can include date of birth, emergency contacts, allergies, medical devices and problems, medications, medical providers and insurance information, important dates, and any other information you want to include.  

Pros:

+ Made specifically for use as medical alert jewelry.

+ Love the packaging and the QR code concept.

+ The plastic QR part is colorful and probably great for kids.

+ Maintaining the Emergency Medical Profile database is built-in to the price of the ID, so you don’t have to pay a yearly fee for your information to be stored.

Cons:

- Not sure that this ID is great for professional, working adults.

- Has a small charm with a medical alert symbol and has a large one on the back of the part with the QR code, and since this concept might not be familiar to emergency responders, this might be overlooked.

- I am wondering whether all paramedics and medical personnel at hospitals are equipped with smart phones in order to read the QR code or even recognize that that is what it is.  I guess to circumvent this, the back of the ID has a web address and code so that it can be entered on the internet if a QR scanner is not available, but that sort of takes away from the concept.

- I don’t love the interface of the online database.  For example, there is no “boyfriend” option.  Additionally, I think because of this, when I attempted to make my boyfriend the primary contact, the system kept reverting back to my mom in the version that medial providers and first responders can see.  My mom is in Michigan and I’m in New York, so while she is definitely top on my emergency contact list, it doesn’t make sense for her to be the primary since we aren’t in the same state. 

- In order for your emergency contacts to be included, it requires that an e-mail or text message is sent to your contacts so that they can confirm.  I don’t really like this.  Other interfaces allow you to assign emergency contacts without requiring that they are contacted to confirm.  I worry that this could freak out unsuspecting people and they might mistaken it as an actual emergency.    

Overall, I think this concept is great and it’s a really innovative use of technology.  However, with many hospitals and medical providers just getting on the electronic medical records bandwagon, I worry that this might be too new for widespread use.

In other words, I love the concept, but am not so sure about the execution of it.

Thankfully, I have never been in a situation where my medical alert bracelet has been needed.  But I think that that’s really the true test of this product and others like it.  It’s great to have peace of mind on a daily basis by simply wearing a medical alert, but it’s more important to have that product work in an emergency situation.   

For more information, visit http://myidsquare.com/.      

And now through April 22, 2014, if you purchase a SquID, you can use the discount code GettingCloserToMyself15 and receive 15% off your order.

* My ID Square was generous enough to provide me with a SquID for free.  However, it was ultimately my choice to write a review, and has to do solely with my personal opinion of the product.

Wednesday, March 19, 2014

A Plea For A Chronically Ill Friend

I’m writing this post to ask for some help and support for a chronically ill friend.

This person has been a part of my support system from the very beginning, and was there for me when many of the people in my life could not or were not. 

My friend was one of the first people I connected with online, and the first blogger friend that I met in person. 

This person has celebrated my triumphs with me and helped guide me through the more difficult times. 

We now live on opposite coasts, and I couldn’t feel farther away from this person.  I feel like we are worlds away from each other, especially at a time like this.

I think that as chronically ill people, we sometimes think unconsciously that nothing else can befall us.  Or maybe it’s always in the back of our minds that we could become ill with something else, but it’s hard to imagine what life would look like in such a case.

I have always wondered with dread what would happen if I ended up with some other serious illness on top of lupus and RA.

But my good, good friend is now dealing with this situation as a reality. 

And my friend has a great attitude about everything that is going on and I deeply admire her courage and tenacity.

I am doing my best to support from afar, but I am asking that others send good vibes and thoughts this person’s way.   

I’ve lost several of the people that I have been closest to in terms of illness, both family members, and selfishly, I don’t want to go through that again. 

But unselfishly, my friend is so amazing and has so much to offer the world and I want them to be able to continue to do that for a very long time to come.

So I hope that, even though I am not saying exactly who this person is, others on the blogosphere can send collective good vibes.  That would mean a lot to me, personally, but I think my friend would really appreciate it, too.   

And to my friend, I say: You know how important you are to me and that I love you and am always here for you.  I hope that the journey you are embarking on is easier than we hope.  I hope that in the near future, this will all just be a blip on your radar, and nothing more.  And even though I live on the opposite end of the country, I will do anything I can to help, in person or from afar. 

And if there’s anyone who can power through, it’s you. 

Monday, March 10, 2014

Something’s Gotta Give

Rarely do I cancel anything.  But lately, I’ve become overcommitted.  This is, of course, and as many of you might expect, not unusual for me.  It is a skill that has worked for me in the past.  And when I was healthy, it was fine.  But now, it’s really not the best way to be.

Even though I’m chronically ill, I do think that there are times when I am coasting purely on adrenaline.  But instead of crashing and taking it easy for a day, as was required by my healthy self, my chronically ill self requires several days, sometimes even a week or two to regroup and totally recover. 

It’s a hard balance because so many amazing opportunities have come my way over the last several months.  And it’s hard to say no to things that I really want to be a part of.  But the reality is, for my physical and emotional well-being, I can’t do everything. 

Recently, I had a phone meeting scheduled for a new project I am hoping to become a part of.  But something had to give.  And at the moment, that was the easiest thing to put on the back burner.  I couldn’t get out of my school or current work commitments, so I looked at everything on my plate, and took off of it the must un-pressing thing.  Fortuitously, the person I was meeting with also happens to be chronically ill and completely understood where I was coming from, which was really great, and made postponing the meeting, even though in my heart I didn’t want to, much easier. 

And it made me realize that I have become more attuned to listening to my body.  My head was telling me that I needed to slow down and take it easy.  So I took two days.  I had only intended to take one, but one wasn’t enough.  So I took some time for myself, reading non-school related, junky reading, and rested, which put me in a much better place.    

When I used to not listen to my body, I ignored the signs, and didn’t stop until a flare was raging and I had absolutely no choice but to stop.  Clearly, that wasn’t ideal.  But now, I am better able to preempt a flare when it is caused solely by stress.  When I feel myself getting too stressed, or I get that feeling where I am always coming down with something but never get sick, I know it’s time to take a step (or two or three) back.

Recently, Chronic Illness Coach Rosalind Joffe wrote a blog post entitled, “the more i do, the better i feel.  sound familiar?

This is me in a nutshell.  Except the more I do, the better I feel is a hoax.  Like I said earlier, I might get an adrenaline rush from being active and doing a lot of things, but it’s a total rouse.  Because the minute I stop, my body shuts down.  It rebels against me, and then I am really at its mercy.   

It’s all about balance.  And when the balance starts to tip, well I really, really have to start to listening to my body and the signals it sends me. 

It’s good to listen before I send my body into a tailspin that leads to a flare. 

As we all know, stress exacerbates many chronic illnesses, and lupus and RA are no different.   

So how do you balance bouncing back and overdoing it?

Wednesday, February 26, 2014

Adventures And Mis-adventures In Rheum Land: Graphic Novel (Version 2)

As promised, here is the computerized version of the graphic novel I made for my Illness Narratives class.  







Obviously this does not contain my whole story, but I am seriously considering continuing with this.

What do you think?

Tuesday, February 25, 2014

Interview About My Academic Work On Support For The Short

I don't always share that much here about my academic work, but I was recently interviewed about it, which is really exciting! 

If you are interested in listening to the interview, it can be found at the Support For The Short website by scrolling down until you find my name, or you can directly listen to Part 1 and Part 2 of the broadcast. 

Monday, February 24, 2014

Adventures And Mis-adventures In Rheum Land: Graphic Novel (Version 1)

For my Illness Narratives class, we had to create our own graphic novel.  I got really into it, so I drew it out and then computerized it.

I am sharing the hand-drawn version today and will share the computerized version later this week.  

I had never read a graphic novel before, and I never realized the amazing and powerful stories that can be told through them.  It has made me re-think the form in which I write my memoir.  Because you can tell a story chronologically and a graphic novel can make it pop, whereas just text can be a bit monotonous. 










Add steroid-induced stupidity to the list, as I spelled steroid wrong throughout. 








If you are interested in learning more about graphic novels, there is a whole genre about illness.  Specifically, I recommend Moms Cancer by Brian Fies, Stitches by David Small, and Cancer Vixen by Marisa Acocella Marchetto. 

I would love to hear your thoughts on mine, and as I said, stayed tuned for the computerized version.

Thursday, February 20, 2014

What Do You do When you’re Doing Pretty Well?

I’m in sort of a strange place right now.

I had my last appointment with my rheumatologist in Michigan in August, then I had my first appointment with my new rheum in November and a follow-up in January. 

As of now, I don’t have another appointment scheduled. 

I am weaning off of methylprednisolone…finally!  I’ve gone from 8 mg a day, to 6 mg for two weeks, 4 mg for two weeks, and I’m decreasing to 2 mg at the end of this week.  It’s a long process, which will be the subject of a post sometime in the next few weeks. 

I certainly continue to have aches and pains, and even swelling, especially in my knees, hips, hands, and wrists. 

I don’t think I’m in remission.  I’m on too many meds, and am not sure where I would be without them.  But from this combination of meds, my liver levels are normal for the first time in eight years.  My kidney levels continue to  border on abnormal, but hold steady enough to not be a concern at this point. 

I recently had a rash on the side of my neck and shoulders that turned out to be fungal, a minor result of an overactive immune system that is being held at bay by meds that suppress my immune system. 

This is the struggle for those of us who have these kinds of diseases.  We have immune systems that mistake our own bodies for foreign invaders and the only real remedy is to take meds that deplete that same immune system.   

So in reality, while I might be in an okay place, these illnesses are never far from my mind…or my heart…

A few weekends ago, I was commenting on the fact that I’ve been doing pretty well, and the next day, I could barely get out of bed.

Every time I get cocky, my illnesses smart me!

I know that where I’m at right now is probably not likely to be a place I will be forever.  And I hope that when I get to a difficult place, I am able to cope with it.

Trust me, I’m not complaining.

But it’s hard to know what and how to feel about this period of comparative wellness, a place that I really don’t feel I have ever been in the last seven years. 

I definitely know that I have these illnesses.  It’s a constant game of tug-of-war. 

And hopefully I’m not totally jinxing myself by writing this post.  

Saturday, February 15, 2014

Patients For A Moment: Winter Blues Edition


This month, I asked people how they cope with the winter blues.  This has been a particularly long and hard winter, especially in my home state of Michigan and here in New York.  And those who know me well, know that I’m a summer baby, so needless to say, I’ve had enough.    

While Iris Carden of the blog Sometimes, it is Lupus, reminds me that it’s not freezing cold everywhere in the world right now,  she does a good job of providing an overview about how the weather, and specifically temperature, impacts her lupus, in the post Ain’t No Cure For The Summertime Blues.

Duncan Cross is coping with winter by going to Florida.  He says he used to be skeptical that warmer weather can be helpful to health, but now he understands why. 

Rhiann Johns of the blog My Brain Lesion and Me, talks about how the cold increases her pain, and that this winter, she is staying active in order to manage it, in the post Don’t be SAD...Banish Those Winter Blues.

Migrainista Emily talks about the fact that winter can be fun for awhile, but this winter has just been too much, in the post Beating the winter blues.  

Thanks to all who submitted posts for this month.

If you didn’t submit a post but have a related one, please feel free to link it in the comments – only related posts, though, please.

Next month’s PFAM will be hosted by Duncan Cross.

Thursday, February 6, 2014

PFAM Is Here February 15, 2014!

It’s that time of the months again, and I’ll be hosting this month’s edition of PFAM.

The theme/question for this month is: How do you cope with the winter blues?

We just entered February, and it has been a really hard winter already, even though we are only just about half way through.

How has this harsh weather impacted your health, and your life in general?    

If you would like to submit a post, e-mail the following to gettingclsoertomyself@gmail.com:

Your name (as it should appear)
Your blog’s name
Your post’s title
Your post’s URL

And make sure you put PFAM in the subject line.

All submissions wishing to be considered should be received by 11:59 p.m. on February 14, 2014.

Monday, February 3, 2014

Sabi Folio Pill Case*

I’ve actually been looking for a new pill case for awhile because the one I used before just wasn’t meeting muster.  It was clunky and hard to open.  And blame it on my lupus brain, but there were several times when I mixed up the end, and ended up taking Saturday’s pills instead of Sunday’s or vice versa.  And if you are on a pill that varies, this is a huge problem.

So this one is so out! 

 Sabi is so in! (Pills not included!)  




 Pros:

+ Discrete

+ Sleek design

+ Easy to open

+ Won’t come open on its own

+ I did a shake test, and you can shake the thing around like it’s a maraca, and all of the pills stayed in there respective grooves

+ Can’t get days confused

+ Holds a full week of pills, with a.m. and p.m. grooves for each day

+ When held vertically, looks like one of those fancy notebooks

Cons:

- Not see through, which means you have to be a bit more vigilant about making sure you take your medication

- Fits a relatively good amount of medication, but depending on the size of the pills you take, may not fit all of them

This Folio sells for $24.99.  They have a larger version for $29.99.  These are a bit on the pricey side, but they really have a great design and are much better than the plastic job I used to have (see above). 

They have some other really cool pill holders, as well.    

For more information on Sabi products, visit http://sabi.com/.

* Sabi was generous enough to provide two Folio cases free of charge, one for me and one for a lucky reader of my blog.  I also mentioned Sabi in my Some Of My Favorite (Chronically Ill) Things For This Holiday Season  post.