The RA Community Is Big Enough For All Of Us

I recently posted the story about the death of 41-year-old reporter Emma Suddaby from RA.  The article has been making the rounds on social media that is related to the RA community. 

One of my Facebook friends, someone I went to elementary school with, but haven’t seen or talked to in person for probably 20 years, posted the following comment to the link on my Facebook page:

“I've had RA since I was 14 and have never heard of anyone dying because of it.  I get the infection risk, but this is an incredibly rare situation.  I'm sorry to hear she struggled so much and was in such discomfort.”

I never knew this person had RA, as by the time she was diagnosed, we were no longer in contact.  Even so, we have been Facebook friends for many years, and I still never had any inkling that we had this disease in common. 

This comment really horrified me.

To me, this comment reads more like it comes from someone who doesn’t have this disease and doesn’t believe it can be this bad, rather than coming from someone who is part of this community. 

To be honest, I am not really sure the purpose that this person’s comment serves, other than adding more fuel to my fire.  Or as a public declaration that this person has RA but it doesn’t really impact their life. 

But it doesn’t read to me as being realistic, and almost comes off as self-hating, or at the very least, in denial about the severity of this disease. 

There is already enough stigma surrounding this disease, especially when you are a young person, so to hear someone in our own community making comments like that is simply deplorable. 

Although while I am including this person in the RA community, it’s not clear whether or not she would consider herself to be a member.

I am taken back to a moment after I was first diagnosed, when I was receiving steroid infusions.  I was trying to get the nurse’s attention to make sure it was okay to listen to headphones.  I couldn’t get her attention, but the girl next to me, who was clearly receiving chemo, told me to go ahead, “You do what you have to do to get through it.”

I was so struck by that, because here she was, receiving chemo, and giving me advice, and making me feel like I was a member of the club.  And we didn’t have the same disease.  So if we can make connections like that with other people who don’t have our same illnesses, think about the relationships we can build with others who have RA.

But solid relationships won’t be built on comments like the one posted to my Facebook page.

The reality is, the RA community is big enough for all of us.    

If we all had RA super severe, we wouldn’t be able to help each other or offer each other hope, and if we all had RA super mild, we wouldn’t need each other.

To be honest, there are times when I’m doing relatively well that I don’t feel like I belong to this community.  But it’s not because people are unwelcoming.  It’s my own insecurities.

I know that I am doing a lot better than some people with RA.  But that’s never seemed to matter in terms of being considered a part of the group and vital member of this community.  And I am so grateful for that.     

This isn’t the first death I’ve heard of at the hands of RA, and unfortunately, it certainly won’t be the last.

When someone in our community dies, it should serve as a call to action.  It should make us more determined than ever to find new treatments and cures. 

It shouldn’t be used as an opportunity to create fractures and friction in the community.  It shouldn’t make us weaker, but it should make us stronger by bringing us together. 

Lupus Denial

So I finally bit the bullet and went to see my rheumatologist. 

When I called to make the appointment, they said she had one appointment today or I’d have to wait for over a month.  So circumstance made me face things head on.

And I’ll admit, I was a bit nervous.

Several weeks ago, I noticed a swollen lymph node behind my ear.  A few days ago, it got bigger and became painful.  For those of us who have been on medications for lupus and RA, we know that there is a risk of lymphoma.  So of course, that’s where my mind automatically goes.  Unfortunately.

I’ve also noticed that my immune system is not up to snuff.  I feel like I am constantly about to get sick, but don’t actually ever get sick, which for me is a telltale sign that my immune system is bottoming out.   I’ve also been having a lot of itching and skin legions.     

So the verdict? 

I am having a lupus flare. 

Did I really need a medical professional to tell me this?

No.

Should I have gone to the doctor two weeks ago when I started noticing things were off, or been really proactive and made a preemptive strike a month ago?

Yes.

My rheumatologist is upping my dose of Quinacrine, as I guess I have been on the lowest dose possible until this point.  She also suggested going back on low-dose steroids while we wait for the higher dose of Quinacrine to kick in.  But I’m not feeling that.  If things stay the way they are pain-wise, I’ll deal, despite my tender, achy joints.  Because I finally just got off of the steroids.    

But why can’t I trust my own instincts?  Why, when I knew things were amiss, did I try to ignore them or assume I was being hypersensitive and that I was just imagining all of these things?

Because I’m in lupus denial. 

I don’t think I’ve ever really wanted to admit its primacy in my life.

To me, my RA, while still unpredictable, is at least more predictable than my lupus, at least that is when I can actually tell the two apart.     

I am an empowered patient, but sometimes even empowered patients work against themselves and do stupid things. 

Empowered or not, I have fears and experience denial, just like everyone else dealing with these illnesses. 

Even six years in, I’m not always  prepared for the realities of these illnesses or the things that could come from treating them. 

I can only hope that the increased dose of Quinacrine will calm things down.  I’m certainly hoping that the swollen lymph node resolves itself so that it isn’t there when I see my rheumatologist again in two months.

And I also hope things calm down because in all of my denying what’s happening, I’ve created an insane work and event schedule for myself. 

But as Tim Gunn likes to say, “Make it work.”  I’m going to fake it until I make it, or at least until my illnesses make it impossible.

So yeah, I guess even though I’m admitting I’m in denial, I’m still in denial. 

Wading knee deep in denial (de-Nile).      

(Several years ago, I had a neck x-ray and my rheumatologist in Michigan never told me the results.  So I pulled that out of my medical record and took it to my appointment.  And as it turns out, those results basically explain both my lower back and neck pain and issues.)

PFAM Transitions Edition

For this month’s edition of PFAM, I asked chronic illness bloggers about how they cope with transition. 

This topic is apropos to me for a variety of reasons, which I’ll get to at the end of this post.  But first, here are the great submissions for this month.

Some posts wrote more about general transitions:

Migrainista Emily discusses many of the transitions that her life has seen over the last eight years, and offers some tips about how to cope with transitions, in the post, 5Lessons I’ve Learned For Coping With Transitions.

Lupus Rhythms’ Talencia talks about how everyday is a transition as she copes with her recent diagnosis, in the post, Transitional Thoughts. 

Cass, of the blog The Wolf and Me, suggests that for her, transitions are anything that deviates from her normal routine.  But she has learned to cope with transitions by planning ahead.  She discusses this and more in the post, How do you cope with transitions? 

Duncan Cross talks about how he feels he copes well with transitions because he enjoys change, which he thinks has helped him in dealing with chronic illness, in the post, Coping with transitions.

And some posts were more about specific transitional events:

In a really poignant piece titled Exposed, Maria of My Life Works Today, writes about what it’s like to go from being a lupus patient to being a cancer patient, and how her experience with lupus helped her with this new diagnosis.

Maureen Kaech of the blog Day by Day with my Adrenals writes about how despite many of the transitions that she has experienced in her life, finding herself with an empty nest has been the hardest, in her post, How do I Deal with Transition?

Sometimes, it is Lupus’ Iris Carden talks about many of the transitions – both good and bad – that come with moving, homeownership, and chronic illness, in the post, A Moving Experience.

In my post, Am I A Bad Patient Or Do I Have Bad Doctors?: When Is It Time To Dump Your Doc?, I write about the transition of finding new doctors when you move, and the difficulties that surround that. 

Transition was an appropriate theme for this edition of PFAM, because as I said in the call for submissions post, I am stepping aside as the administrator of PFAM and Duncan Cross, who started it all, is taking it over again.

I was so honored when Duncan asked me to take it over when his life got too busy to do it, but things have slowed down for him and picked up for me.  So PFAM is back in his capable hands.    

Duncan will be hosting next month’s PFAM, and you can view the call for submissions here. 

Healthline Best Of...And World Autoimmune Arthritis Day Blogger Meet And Greet

I have some great news to share.  First, my blog was selected as one of Healthline’s 12 Best Lupus Blogs of 2014!

Second, I will be taking part in World Autoimmune Arthritis Day and will be included in their Blogger Meet and Greet.  Information is below about World Autoimmune Arthritis Day and my specific event.  

The event begins May 19th at 6 a.m. EST and ends May 21st at 5 a.m. EST.  It is totally virtual.

For more information, visit: http://worldautoimmunearthritisday.org/.  You can register now through that site or by visiting this direct link: http://engage.vevent.com/index.jsp?seid=15&eid=3468.

Pre-registration is just $5 for the live event.  Registration during the event is $7.  You can also access for free after it has taken place.  

I hope you will take part in this event, and I hope that you will attend my Blogger Meet and Greet, which will be taking place on May 20th from 10 p.m. to 11 p.m. EST.  

 

It is truly thanks to all of you that I am where I am today.  I love what I do and I hope to continue to share my experiences with you!

Am I A Bad Patient Or Do I Have Bad Doctors?: When Is It Time To Dump Your Doc?

I’ve talked about my lack of attention to pain management, both with my doctors in Michigan and my doctors in New York.

Now I’m having other issues.  After my last rheumatologist appointment, which was in January, I was not told to make a follow-up appointment. 

And I’m not being required to get blood work done every three months like I was in Michigan. 

The last time my liver levels were checked was September, and at that time, only one, not both ALT and AST, was tested.

I’ve been having some itching attacks recently, which typically only happen when my liver levels are high. 

But I don’t want to go to the doctor.  The medication combination I am on now has been working fairly well for the most part, and I don’t really want to have to change it. 

Chronically low white blood cell count and extremely elevated liver levels have always been the downfall of almost every medication regimen I have ever been on.   

Plus, the way my current insurance works, I pay a $15 co-pay for office visits, but then I pay 20% of the total price of the visit and any lab work and other tests.  That adds up quickly, which means that I feel like going to the doctor only when it is absolutely necessary.    

And unfortunately, I don’t have the same rapport with my rheumatologist in New York that I did with mine in Michigan.  Despite his flaws and our issues when I first started seeing him, I really miss him, and would go back to him in a heartbeat if I move back to Michigan.

I’ve been told by several people to switch hospitals for rheumatology care.  However, I will be interning this summer at the hospital that people want me to switch to, and it doesn’t look like their rheumatology department even accepts my insurance.  

So I’m in a bind. 

For a lot of reasons.

How long should I be seeing a doctor for before I feel comfortable with them?  To be honest, I have ambivalent feelings about all of the my current doctors.  They seem like fine doctors, and I don’t expect five years of rapport that I had with my doctors in Michigan to translate into rapport with my new doctors in just a few months. 

But – if each visit is like a date – I’m waiting to get that feeling, and I’m just not.

And I know that my feelings about New York in general range from ambivalent to outright hatred.  But I really want to love my doctors.  Where my health is concerned is of utmost importance to me.  But right now I just don’t love my doctors. 

And I’m honestly not that sure how much they like me, either.         

So when do I walk away?  At what point will I know that it’s time to say goodbye and either find new doctors or get really ballsy and go it alone for a while?    

PFAM Is Here May 19, 2014!

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

The question for this month is: How do you cope with transitions?

The last nine months of my life have seen a lot of transitions: I defended my dissertation, received my PhD, moved from Michigan to New York, had to find new doctors, started a new academic pursuit, and am about to finish the first year of that academic pursuit.

Your transition can be in life in general, health-wise, or both.

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 posts’ URL

And make sure you put PFAM in the subject line.

Speaking of transitions, Duncan Cross will be taking back administrative duties for PFAM after this month.  My life has gotten a lot busier since I took over for Duncan, and his schedule has opened up.  I am sad that I am taking a step back, but know that PFAM is in Duncan’s very capable hands.  I do hope that I will get the chance to host, and can hopefully pinch hit for Duncan if and when he needs it. 

All submissions wishing to be considered should be received by 11:59 p.m. on May 16, 2014.