Patients For A Moment: What Do You Do When You Can’t Keep Up Edition

This month, I asked people what they do when they can’t keep up.  I didn’t submit this month for that very reason, but there are some great posts from people who did:

Iris Carden from, Sometimes, it is Lupus, asks the question, “when did I last keep up with anyone or with anything?” in the post Not Keeping Up.  She makes a good point that we can’t beat ourselves up, and that for a lot of us with chronic illness, not keeping up has become a way of life.

Rachel, of Fluted Cups and Ampersands, in the post, Keeping Up, refers to herself as a Lifetime Original Movie, and suggests that she deals with falling behind just as she does any other negative emotion.

Duncan cross hints at the deeper meaning of this month’s question, which is the intangible, emotional aspects of what it means when you can’t keep up, in the poignant post, I Grieve.

From Lifestyles of the Ill and (Mostly) Blameless, Shruti talks about what life is like now that she has gone back to school, and the time suck that comes from balancing school and managing chronic illness, in the post Breathing Underwater.  I can totally relate!

                                                                                                   

The last line of Ms. Rants’ post, Handling the “too much”, says it all: “Instead, I do what I can to have the best life that I can within those limitations,” over at the blog Chronic Rants. 

Barbara Kivowitz, of In Sickness As In Health, talks about having illness post-traumatic stress disorder (PTSD).  When her pain increases, she goes to a place of never and always, in the post, When It Just Gets To Be Too Much.  While I think it is important to try to not operate at extremes, it’s hard to stay rational when the pain comes flooding back.

In the post, Strategies for Coping During Crazy Times, Migrainista Emily offers practical suggestions, such as asking for help, in times when you can’t keep up. 

Abigail Cashelle, over at Hidden Courage, who is going through several life changes,  also offers up practical tips, in the post, PFAM November 13: When You Feel Like Giving Up.

Jamie Valendy, Chronic Migraine Warrior, offers a poem, in the post, When Everything Is Just Too Much.

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 Abigail Cashelle at the blog Hidden Courage.

Also, I am in need of hosts for every month of 2014, so if you are interested in hosting, please e-mail me at gettingclosertomyself@gmail.com.

PFAM Is Here November 15, 2013!

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

The theme/question for this month is: What do you do when you can’t keep up?

Since my move to New York, I often feel like I am barely keeping my head above water.  I love what I’m doing, but it has definitely been challenging.

So what do you do when you feel like everything is just too much? 

If you would like to submit a post, e-mail the following to gettingclosertomyself@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. November 14, 2103.

Happy writing!

September And October Roundup

Where have I been?  I’ve been a bit all over the place, literally. 

So today I’m sharing all of my posts from September and October from around the interwebs.  That way, you can catch up with me while I work on new posts for Getting Closer To Myself.

Happy Reading!

* From http://rheumatoidarthritis.net/: *

“Moving With RA”

“Getting Stuck In The Fitting Room With RA”

“When Having Insurance Isn't Reassuring”

“Disposing of RA Medications Properly”

“Another Wardrobe Malfunction Thanks To RA”

“Every October I Cringe: I’m The Grinch Of Breast Cancer Awareness Month”

* From http://www.creakyjoints.org/: *

“New blogger alert: The RA Academe”

“Back to school...back to reality”

“What? $365 for medical records?”

“America gets its pink on for breast cancer - why not blue for arthritis?”

* From http://www.healthcentral.com/rheumatoid-arthritis/: *

“When You Move, RA Comes With You”

“Knowing How To Talk The Talk”

“The Trials And Tribulations Of Establishing Care When You Move”

* From http://gettingclosertomyself.blogspot.com/: *

“Lupus And RA Have Brought Me Here”

“What It Feels Like…To Have Lupus and RA In The City”

“New City, New Care = So Far, So Good”

“I Am A Disruptive Woman In Health Care”

There you have it!  That’s September and October in a nutshell.  Now you know what I’ve been up to.

I will probably try and do a bi-monthly roundup so that you can catch up with my posts wherever I am!

I Am A Disruptive Woman In Health Care

I am a disruptive woman in healthcare.

I don’t take no for an answer.

I don’t accept second-rate treatment at the hands of doctors, nurses, or other medical staff.

I believe in health advocacy and self-advocacy.  I believe in self-determination and patient-centered care. 

I believe that everyone has a right to a second opinion.

I know for a fact that it’s not all in your head, or my head, and that chronic illness is a reality for millions of women in this country. 

I have lupus and rheumatoid arthritis. 

I’m a chronic illness blogger.  I blog for hope.  I blog for change.

I’m a patient-advocate in the making.

And I am a disruptive woman.

***

Are you a disruptive woman (or man)?  If not, you should be!

New City, New Care = So Far, So Good

Well, establishing care in New York hasn’t been as easy as I’d hoped, but the care that I have received so far, other than at the student health center, has been pretty good.

I have student health insurance, so I have to get referrals from the student health center.  I went there, and was honestly less than impressed, but have basically set up a relationship so there is someone I  can e-mail there when I need a referral.  This means I do not need to make the trip to the student health center every time I need a referral, and I think this relationship works well for all parties involved.  I don’t think they really want to deal with my complicated situation, and I’m not sure I really have a lot of faith in trusting them to deal with my complications.  (And I don’t think this is necessarily unique to this one student health center, certainly my prior experience suggests otherwise)  So now that, that’s out there…

I got a recommendation for a primary care doctor, but when I tried to get an appointment with her, I was told she was no longer accepting new patients.  Strike one.  When I called to get an appointment with the rheumatologist I wanted, I wasn’t able to get an appointment until the beginning of December.  Strike two.      

But that was a function of me not having my new insurance information until the beginning of September – and the student health center being unwillingly to help me set up care over the summer – because I think I’d be crazy if I tried to suggest that there is a shortage of doctors in New York City.

Anyway, I was able to pick a different primary care doctor, who I was able to see a few weeks ago, and she gave me a recommendation for another rheumatologist, who I will be seeing at the beginning of November.

So far, I’ve noticed some major differences from the care that I had previously that I am pretty impressed with:

They actually – both doctors and support staff – know how to use their electronic medical records (EMR) system.  My previous care team, a year into using the system, still had no clue what they were doing, and this caused a lot of extra work for me.  But my new care, not only do they push the system on patients, but they actually utilize it, and do it well!  And it’s funny because they actually use the same system that my previous doctors use.

In New York, while I was able to transfer my prescriptions, I was told that they only allow one refill with the transfer, so I would need to get new prescriptions.  My doctor submitted all of them directly to my new pharmacy so they will be there when I need refills. 

Another major difference was that my blood was drawn in the exam room, rather than being sent to a lab somewhere else, either onsite or offsite.  That’s a nice change! 

I also didn’t feel like a sick person.  Maybe that’s a weird thing to say, but I didn’t.  Maybe part of it was the fact that I didn’t have to go sit in the waiting room of a lab where I was the youngest person, and everyone looked at me with pity.    

Every time I call to get an appointment, as soon as I give them my information, they say How can we help you today, Miss Rott?  I don’t feel like I ever got that kind of respect from my previous medical care team.  In fact, the support staff were usually pretty disrespectful, if not downright mean. 

And so I have to wonder, what’s the difference?

As my boyfriend pointed out to me, there are several major hospitals in the area, and because they are competing for patients, the quality of care and treatment that patients receive is better than it might be elsewhere.  For example, where we lived previously, there was really only one game in town as far as a major teaching hospital was concerned, and so, knowing this, I think they skimped a bit sometimes.  Or maybe they just didn’t care because they knew they were the only game in town. 

It’s not necessarily that I didn’t receive good care, but the extra touches weren’t there.  And I guess I didn’t really know they weren’t there until I now have care where they actually exist. 

Sometimes change is a good thing!  And sometimes a little competition is healthy!  

What It Feels Like…To Have Lupus and RA In The City

For some people, moving to New York City is the pinnacle, a true Cinderella story.  Not for me.  For me it has brought up a lot of issues that I didn’t really have to think about before.

In Michigan, I had a 10-block radius in which the majority of my life took place in.  Of course, I went beyond that, but it basically assured that even on bad days, I could get where I needed to go and get home, even if I was feeling pretty bad.

That’s not the case here.

I also have never had to deal with a commute before, let alone one that takes me so far away from home.

Some day I can tell my future children that I had to take a bus, subway, and train – over an hour commute – and then walk 25 minutes uphill to get to school.   

And let’s talk about anxiety.  When I first got sick and was diagnosed, my world felt totally crazy, so I began taking anxiety medication.  New York, by design, makes my anxiety worse.  It’s sensory overload times a thousand.

The subway is its own particular brand of anxiety-inducing.  Imagine what it feels like to be surrounded by darkness, in a metal contraption that is moving at high speed.  For me, I feel totally claustrophobic.  Not to mention the fact that the train tends to rock back and forth in such a way that you feel like you are on water rather than land.  Due to lupus, I have balance issues, which aren’t conducive when you have to stand up on a crowded subway.  Lupus also causes me to be very sensitive to smell – so I will smell something – and it will literally stop me in my tracks and make me nauseous.  Not a good thing when you are riding the subway in ninety degree weather. (I’ll let your imagination do the rest)   

And it’s just like who ever came up with the idea to stick giant tubes with wings in the sky?  It gets people where they need to go, to be sure, but it doesn’t have to make people feel good while it’s happening.

And the city is totally unforgiving.  It’s crowded and fast-paced.  If you can’t keep up, you don’t stand a chance.

When I get home at night, I get into the elevator, and I almost always collapse against the back wall.  I am exhausted to the max.  While other people might have energy saved up, my energy stores are beyond empty, and sometimes I wonder how I will be able to get up and function the next day.

In a city characterized by walking and public transportation, it doesn’t leave much room for those of us with health issues.  We are at the mercy of what is available to us.  The subways are full of stairs, and if you take them two at a time, you’re likely to be left in the dust.

I feel like I’m back in my first year of grad school in Michigan, when all I did was go to class, sleep, eat, and read.  That’s pretty much all I have energy for at the moment.   

And in the concrete jungle, my joints take a beating.  But right now it’s the mind-melting fatigue that I’m really trying to manage.

In general, for me, RA means mainly joint pain and fatigue.  Lupus brings with it nausea, dizziness, headaches, and rashes.  I sometimes wake up feeling like I’m hungover, like I’ve been hit by a truck, and flattened against the wall. 

Right now, we are living with my boyfriend’s dad until we find our own place, which means we have the luxury of a doorman and an elevator.  But my boyfriend tells me that every amenity adds to monthly rent, and that having an elevator can add up to $500 more to your rent a month.  I lived on the top floor of a three-floor walk-up in Michigan, and there were days where I would practically have to crawl up the stairs at the end of the day. 

I wasn’t made for this always-on-the-run, push-your-body-to-the-max lifestyle.  It isn’t me, and it’s not conducive to trying to manage multiple chronic illnesses.

In the city that never sleeps, all I want to do is crawl into bed.