Loss On Top Of Grief On Top Of Illness

I’ve been struggling a bit emotionally lately. 

It just passed the six month mark since my dad died, and I’ve been missing him a lot.

Some days I feel very coherent about it and present, and some days it just feels completely unreal, like it never even happened.    

On top of that, I found out that one of my fellow bloggers on HealthCentral, Brad Carlson, passed away from complications of RA. 

When I received the e-mail about it, it felt like a sucker punch to the gut.  I couldn’t believe it.  Brad was just 50 years old, and was diagnosed with RA six years ago.

I’ve been living with lupus and RA for seven years now, so that really hit home for me. 

Having lost my dad when he was 62, I know what it feels like to lose someone before their time.  I have been faced with my own mortality.  But this hit me even harder.  I know people can die from RA, but I’ve never known someone, even indirectly, that has. 

And it feels weird.  I posted about it on Facebook and Twitter, and people offered their condolences. 

But who am I to take claim of this loss? 

Who am I to feel or not feel something about this?

How do you get all broken up about someone you’ve never even met before?

I never met Brad in person.  I don’t even think we ever talked on the phone.  But we communicated via email, and by sharing our struggles with RA, we knew each other in that way. 

And I realize…We do need sympathy.  As a community, we mourn this loss collectively. 

And we didn’t have to meet.  We were partners in the struggle that is living with RA. 

I know that death is a part of life, but it doesn’t make it an easy part, especially if you lack the understanding as to why it had to happen when it did. 

Lately, I feel like people expect me to be over the death of my dad.  That I should just move on.  But it’s hard to move on when someone who was so important isn’t there. 

There are so many things that I wish for.  I wish there wouldn’t have been a flood.  I wish my dad wouldn’t have gone to work that day.  I wish Brad would never have been diagnosed with RA. 

I struggle with how to make sense of these events in my own life, as I grapple with my own issues. 

It feels like too much.  

Dear IKEA, Get It Together!

Moving, under the best of circumstances, is a spoon suck.  It’s even more of a spoon suck when things don’t go as planned.

After ordering over $1,200 worth of furniture from IKEA, we ended up realizing that we needed a new bed. 

Neither my boyfriend nor I drive or have licenses, so my boyfriend and his friend rented a truck to move the rest of our stuff, and stopped at IKEA to buy a bed.

Upon opening the bed to put it together, we discovered that a piece was broken.  We immediately called IKEA and they said they would FedEx a replacement part.  Keep in mind, they had a picture that we emailed them of the part and the damage. 

A week later, we received the completely wrong part.  The part we needed was wood and they sent us a metal piece.

Again, we contacted them immediately.  They said our case would be put on high priority.  A week and a half later, we received the correct part, but with even worse damage than the original piece.

We have contacted them via phone and email at least 10 times at this point. 

This has been going on for over a month.  I had hoped that they would rectify this situation on their own. 

I didn’t want to play the illness card, but I’m finally at that point.  We have been sleeping on a mattress on the floor for over a month now.  I have lupus and RA.  That’s not great for my joints.

Not to mention that the stress of this situation hasn’t helped health matters either.   

And IKEA just can’t get it together.  I have already told my credit card company that I will not pay the $1,200+ bill until this situation is resolved.  And I’ve filed a complaint with the Better Business Bureau.

I don’t mess around – and we need a bed! 

In the past, I have had nothing but good experiences with IKEA.  My apartment in Michigan was almost entirely furnished with IKEA products.

But this situation is different.  I shop A LOT.  And this is by far the worst customer service I have ever experienced. 

I really, really did not want to play the illness card.  But nothing else is working.  And it’s the truth.  This isn’t a healthy situation right now.  And IKEA needs to fix it.

They are not acting in good faith, and they are not standing by their product or their company name. 

Come on, IKEA!  Get it together! 

#ChronicLife Redux

Britt, TheHurt Blogger, came up with this idea to live tweet her life with chronic illness on Twitter for 48 hours.  I was so inspired by the amazing interactions that were created because of it that I decided to do my own version of #ChronicLife. 

I will include all of the tweets here so that you can see them if you missed them while I was live tweeting, or if you want to take a look at them again.  They are presented with the most current listed first.   

I learned a lot from this experience.  I learned that there a lot of people out there, aside from my mom, on both FB and Twitter that follow my story.  I learned that my disease is not in control and that there is a strong likelihood that my current medication regimen is no longer working. 

More than anything, though, I was reminded once again about the robust chronic illness community that exists online, and that has helped me so much over the last seven years.

This experiment went beyond lupus and RA, and included others living with other chronic illnesses, as well. 

This experience is so much more than a hashtag.  It is a movement toward greater awareness and advocacy, so that those with other chronic illnesses can see that our experiences are similar, and so that those without chronic illnesses can get a small glimpse into what our lives are like, living with chronic illness.   

I truly want to thank everyone who supported this effort, who favorited and retweeted, and who followed along on the journey.  This wouldn’t have been possible without all of you.   

Thursday, February 12, 2015

Just want to thank everyone who joined in on this #ChronicLife journey the last two days. I’m grateful for the support. Will blog next week!

I hope people don’t view the last two days as me simply complaining. Wouldn’t be doing this if my life wasn’t impacted by illness. #ChronicLife

Zonked out again. Just got up for meds, etc. Wondering when this cycle is going to stop. Work/school, eat, sleep is all I do. #ChronicLife

Veggie gumbo. BF made a double batch over the weekend so we’d have leftovers for a few meals this week. #ChronicLife

This is the face of pain. Sexy, right? I wonder where this falls on the pain scale. #ChronicLife

Today was a real struggle. Lots of pain and fatigue and I pushed myself too hard. Looking forward to the weekend. #ChronicLife

Invisible illness sucks. I could have used some extra help and kindness today, but I look young and healthy. #ChronicLife

Do I look as tired as I feel? No spoons left whatsoever. #ChronicLife

  

 Two classes down, one to go. And I need a nap badly. Really badly. #ChronicLife

One class down, two to go. And all I want to do is go to bed. #ChronicLife

I have come to find cross-body bags more comfortable than regular one-shoulder bags, but school… #ChronicLife

 10 minute walk to subway, 30 minute subway ride, 30 minute train ride, and 20 minute walk to campus. Finally at school! #ChronicLife

Escalator was off and didn’t feel like waiting for the elevator, so I walked up the escalator. Big mistake! Could barely walk. #ChronicLIfe

Good morning! Love my @Keurig so I don’t have to battle with a heavy coffee pot. #ChronicLife #coffeeaholic

 Didn’t sleep well at all. Will probably be running on fumes today. #ChronicLife

Wednesday, February 11, 2015

Signing off for tonight. More #ChronicLife bright and early in the morning. Are you all ready for school? Don’t worry, I’m not tiether.

As is my MO lately, I crashed at 8:30. BF just woke me up to brush my teeth and take my meds. #ChronicLife

 Roasted veggie pizza and veggie meatballs. Courtesy of the BF. He’s so good to me. #ChronicLife #mymancancook

Post shower #selfie. I was too tired to shower this morning. Now it’s pajama time. #ChronicLife

As tired at the end of the day as I was at the begging. That means fatigue is bad. But at least it’s still light outside. #ChronicLife

This struggle is for real. Even the good days can be a struggle. Working with illness is a struggle. We power through. #ChronicLife

There are bright spots. This makes me happy beyond words: http://medicinex.stanford.edu/medexed-speakers/... #ChronicLife #medx Crazy that people care about my story

You’re hearing it here first: After being on my longest running medication regimen, I believe it has stopped working. #ChronicLife #realtalk

I’m exhausted already. This is one of the most difficult part of living with these diseases. Battling fatigue. @ChronicLife

Been awake and morning meds have been on board for two and a half hours. And I still feel like I am wading through jello. #ChronicLife

10 minute walk to subway. 25 minute subway ride. 20 minute walk to work. Is it bedtime yet? #ChronicLife

Only had a seat on subway for half the time. Took all my energy to hold myself up. #ChronicLife

No makeup this morning. No energy and moving at a snail’s pace. I’ve got to conserve save my spoons for the commute. #ChronicLife

Let my #ChronicLife commence. Up, but not at them. Super stiff and still in zombie.

#ChronicLife

Just a quick post to let you know that I will be chronicling my life with chronic illness this Wednesday, February 11, 2015 and Thursday, February 12, 2015 on Twitter.

Follow me on Twitter at @LeslieRott and the #ChronicLife, or watch Facebook for tweets.

To find out more about the #ChronicLife experiment, visit The Hurt Blogger.

Do You Keep A Stock Of Meds With You Just In Case?

Now that we no longer live in Manhattan – and hopefully I will fill you all in on the move in a future post – I’ve decided to carry at least one night and one day’s worth of meds with me at all times.

The Blizzard of 2015, which wasn’t quite what we were expecting, also prompted me to make the decision to carry some meds with me at all times.

Having to commute from outside of Manhattan and back means that if there are severe issues with the train or weather, I might not be able to get home.  Because we know people in Manhattan we can stay with if we need to, there is a real possibility that there may be times when we have to do that.

And the main thing that would prevent us from being able to do that – or would at least make it difficult if we didn’t have a choice – is me not having my meds. 

I can’t sleep without my night meds, and if I don’t take my day meds before noon, I won’t feel good.  Yeah, it sucks to be in a situation where I am that dependent on meds, but such is life with lupus and RA, I guess. 

The only time I ever really have extra meds with me is when I’m traveling.  I always bring all my meds with me just in case.  And that seems totally logical. 

But the idea of getting stuck in the City, without my meds, seems kind of ridiculous. 

It’s just another bizarre thing with New York living that makes me realize that I’m not in Michigan anymore.  I’m not a fifteen minute walk home anymore.  I’m not even a fifteen minute drive home anymore. 

The thought of not being able to get home at night feels me with dread.

But what fills me with more dread is not having my meds. 

I guess this is sort of a simple thing, and I’m surprised that I never thought of it before, but I’ve never had to think about it before. 

I’ve always known at the beginning of the day where I will be going at the end of the day, and that place always has had my meds.

This also presupposes that I have enough of a stock of meds to do this in the first place. 

For one day and one night’s worth, I do.  But not much more than that. 

So I’ve taken an old prescription bottle, put in a day’s and a night’s worth of meds in it, and have tucked it away in a pocket of my purse, so it will be there just in case.

Hopefully this will provide me with some peace of mind, especially as we prepare for another major winter storm.    

I guess it goes to show that it’s best to hope for the best and prepare for the worst.   

Sometimes the world outside of illness is just as unpredictable as the world with illness.