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.  

Debts I Can Never Repay

The last two months have been some of the most difficult of my life.

Learning to live to without someone so close and important to you is truly unbearable. But there were bright spots of light in the darkness, and I am so grateful for that.

As I begin to come out of the fog of grief and sorrow, and re-orient myself to the real world, I realize that there are people I formally need to thank for their help and support.

First of all, the many groups that have come to feel like family. I am grateful to my CreakyJoints family, my Health Union family, my Hospital for Special Surgery family, my Medicine X family, my Sarah Lawrence Health Advocacy family, and my virtual/blogger family.

I have to thank my wonderful friend “A” for providing invaluable advice for dealing with law enforcement, and for literally driving across the State of Michigan to attend my dad’s funeral.

Three weeks after my dad died, “A’s” dad died. I was in California for Medicine X, so I was unable to attend her dad’s funeral.

While I know “A” harbors no anger at this, it is something that I have difficulty reconciling.

In my mind’s eye, I always imagined that when one of her parents died, I would be there for her, in person, no matter where I was living or what I was doing at the time.

Obviously, I never anticipated that she and I would lose our dads three weeks apart, when we were both barely thirty years old.

My friend D, who is always there for me, was incredibly supportive, especially considering she was preparing for a cross-country move. Thanks for letting me cry in public as I recounted the many events that transpired before, during, and after this ordeal.

To my friends “E” and “R”, who were there and available through it all, I am so appreciative.

I also appreciate “R” for sharing her son with us. His happiness and innocence provided some much needed light.

For “J”, who drove all the way from Ann Arbor twice, your presence was deeply felt and much needed.

For “C”, who, after all that you’ve been through, has always been there with me. I am sad that I had to join this club, but I am forever grateful for your strength and comfort.

If there is one thing I have learned from this experience, it is that the people you surround yourself with are so incredibly important.

I am kind of impressed with myself that through the years, I have managed to collect so many amazing friends along the way, who truly proved how amazing they are in helping me through this difficult and unexpected event in my life.

It’s not just that they were there when I needed them, but they were there to listen, and to cry along with me.

My parents have always embraced my friends, and I know that many of them had come to love my dad, even if they only met him in person on a few occasions.

To my boyfriend, I couldn’t have made it through this experience without him.

All of my other family and friends that called, wrote, sent text messages and emails, or were physically present in some way, thank you.

To those that I have left out or forgotten, please know that in small and big ways, I am grateful for the amazing love and support that has surrounded me.

When I got sick, I felt like I became a taker and not a giver. I felt like I was taking more from my friends than I was giving back to them. And I guess there are many times in our lives when this is the case, and we take more than we can give. I hope that someday, I will be able to adequately give back to the people I have mentioned here, who have given so much of themselves for me.

As I mark two months since my dad died, I continue to be hit with the tremendous loss and what it means for me life, but I also am reminded, in big and small ways, about how much (and how many) people I still have.

My New “New Normal”

When I first got sick, I had to re-evaluate my life.  I had to adjust what my expectations of normal were.  And now, after the tragic and untimely passing of my Dad, I’m finding that I once again have to re-evaluate my life and my priorities, and try to return to “normal” functioning, whatever that actually means at this point, I’m still trying to figure out.

There are already things that have changed…

Right now I am eating to live, not living to eat.  Sometimes food tastes good and sometimes, it tastes like nothing.   

Days that I get up, get out of bed, put on real clothes and do more than stare at the wall are a good day.

I know my dad wouldn’t have wanted my life to stop because his did, but it doesn't feel right.  It doesn’t feel right trying to move on from this.  It really doesn’t.    

Even though I know he wouldn’t have wanted it this way, it feels macabre to do the things that my dad no longer can.

And there are things we would never have thought anything of before, that become meaningful now…

We will never again think of a cellphone call that goes unanswered as no big deal.

We will never look at a rain storm and not be filled with dread.

We will worry that something bad has happened when someone arrives home later than expected. 

Someone recently said they hoped my illnesses were giving me a break, but honestly, I would rather that my physical pain and my emotional pain match, rather than being totally engulfed by emotional pain when the physical presses me to move forward, to move on.

Right now I feel like my brain is mush, and like I’m walking at a snails pace. 

Many of you reading this right now are probably thinking that I need therapy.  And I do, I know I do.  But right now I need to sit with all that has happened and deal with it in my own time before I bring in a stranger to help me work through it.

When I got my diagnoses, I walked out of the doctor’s appointment feeling like the world had irrevocably changed, but I was the only one to notice it.  In this case, the world has irrevocably changed, but I’m not the only one to have that feeling.  Besides my family, it has become apparent over the last several weeks that my Dad was loved by many, many people, and he made lasting impact on those that had the pleasure of knowing him. 

Two weeks ago, I could barely walk, barely breathe, was nauseous and dizzy.  I could barely keep it together.  This week, I am being forced back into somewhat of a routine, trying to prepare myself for all that I had originally planned to take place in the coming weeks. 

Maybe I’ll get back into the swing of things by doing new things.  I’ll be attending the Stanford MedX Conference from September 3, 2014, to September 8, 2014, and I’ll be attending the ePatient Connections Conference September 15 and 16, 2014.

My family has urged me to fulfill these commitments despite everything that has happened.  They tell me that my Dad would have wanted me to forge ahead, despite his tragic loss. 

That’s really the only thing that’s keeping me moving forward right now – that my Dad would have wanted it that way.     

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.)

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.   

Blame It On Prednisone

I knew I was in for it last week having three different doctors’ appointments.

I’ve gained weight.  I’m not happy about the situation, but I am aware of it.

And it’s unnecessary to repeat this fact.  I know it, I’m trying to deal with it, and I don’t think it takes years of medical school to be able to “diagnose” that.  It is what it is.   

It’s a known fact that carrying extra weight around is not good for arthritis, and yet, we get put on medications that are known to cause weight gain, Prednisone being the main culprit. 

(And to be clear, we are talking about a 10-pound weight gain compared to my normal weight and a 15-pound weight gain compared to my ideal weight.  But for a person who normally weighs right about 100 pounds, 10 pounds looks and feels like a lot, at least to me).

For me, 5 mg of Prednisone does nothing.  20 mg makes me crazy, and apparently so does 10 mg.

Honestly, I really thought that if I was on less than 20 mg a day, I wouldn’t have any problems.

But lately, I’m stressed, anxious, and emotionally volatile to a degree I have not been before.

I really thought I was about to lose it.  I thought to myself, “This is what happens when graduate students are writing dissertations and they go nuts.  This is how it feels because it’s happening to me.”

And I was really convinced that the world was going to end at any moment.  I feel like time has gotten away from me and there isn’t enough time to do everything that needs to be done.

I wasn’t sleeping.  In a month, I could count three days in which I actually felt like I had restorative sleep.  And my brain never shuts off.

I know it’s something that not everyone likes to talk about, but I will admit that a significant member of my medical team is my psychiatrist.  Very early on in my illness experience, I developed severe anxiety.  The decision to go on yet another medication was not an easy one, but was definitely necessary for me. 

So last week, I went to my psychiatrist and we upped my dose of anxiety meds.

But my psychiatrist also mentioned that all of the things I was telling her – unmitigated weight gain, my anxiety and emotionality, and my inability to sleep, are all new symptoms since I saw her three or four months ago. 

And since that time, the main thing that had changed was that I had started back on daily Prednisone.

It was like being hit over the head with a frying pan.  Everything makes so much sense now.  Of course it’s mainly the Prednisone.  Why didn’t I think of that before?

Prior to that, over the last few years I would say, I have been on Prednisone on an “as needed” basis, which for me meant once about every three or four months. 

Because I hate the dreaded P with a Passion.  And if the last few months are any indication, I know why I hate it.  It dulls my pain, but it increases things you don’t want increased. 

And as I learned when I saw my rheumatologist last week, while Prednisone is good for pain management, it is bad for symptom management.  And my RA has started to come back with a vengeance.

For the first time, my rheumatologist admitted to me that he doesn’t think long-term Prednisone is a sustainable option for me.

I couldn’t agree more.  It’s not a sustainable option for my waistline, my anxiety, my sleep schedule, my boyfriend, or my life in general. 

So right now I am tapering down on the Prednisone and I will be starting Rituxan at the beginning of March.  This new treatment option is scary, I must admit, but it would be great if it works.  I’ll of course be writing about this a lot more in the weeks and months to come, but for now, I’m glad I have a scapegoat that is so easy to blame for some of my behavior over the last few months.

Although in some ways, it kind of feels like a copout.  Okay, let’s blame the Prednisone.  But on the other hand, it really does make sense.

I just truly haven’t felt like myself and everything has felt like too much.  It has really been a struggle to keep it together. 

I guess I took for granted that since I was feeling relatively okay physically, it didn’t matter how I felt mentally.  Or that since the Prednisone was doing what it was supposed to do for the pain, it didn’t matter if it was throwing all of these other things off. 

And I’m glad that someone on my medical team was able to pinpoint this, almost instantaneously. 

But I can’t help but wonder: If I suddenly lose my filter, and start saying whatever comes into my head, can I blame that on the prednisone, too?

Can You Say Chronic Illness Burnout?

There’s a lot going on in my life right now.

I had a repeat colposcopy yesterday, a psychiatrist appointment on the 1^st, a kidney ultrasound on the 4^th and a follow-up appointment with my PCP on the 8^th. 

And I feel like shit. 

If I wasn’t completely, totally, and utterly exhausted from this flare, I’d be totally exhausted by the litany of appointments I have coming up. 

And the last colposcopy I had sent me into a four or five day flare, so the fact that this procedure is happening right now is really sucky. 

Chronic illness is unpredictable.  So is life. 

But it hurts to walk, to breathe, you name it.  Climbing the stairs to my third-floor walk-up might as well be climbing Mount Everest right now. 

I wonder how much of yourself you have to give up on this chronic illness journey.  It’s not just about the blood they take and the biopsies and the litany of other procedures. 

At what point do you go from being yourself, a human being, with thoughts and feelings, to just being a patient, a number, and nothing more?

Right now I feel like a piece of meat.

I get poked and prodded, told things I don’t want to hear, and I guess I’m supposed to sit there and take it, without showing emotion or disdain.

This journey is hard, and some people make it harder.

I need a break from all this.  The last few weeks have actually made me feel like a sick person.  And I don’t like that.  At 27 years old, there should be a whole lot more to my life than doctors’ appointments, medical procedures, and not feeling well. 

And to some extent, there is.  My family and friends are very supportive and willing to help in any way they can.  And my boyfriend has been by my side every step of the way.  So that’s not what’s missing in this equation.  What’s missing is some relief.  What’s missing is a medical professional really taking a holistic approach and actually caring how I feel, both physically and emotionally. 

But that’s not what’s happening.  Instead, I feel like a cow being led to slaughter.  And a human being, a person shouldn’t have to feel that way.  

For the first time in a long time, I feel damaged.  I feel less than.  And it’s not a good feeling at all.