Someday, Someday It Will Be Okay

I don’t avoid talking about difficult things on this blog, but sometimes I need time to process and think through things before I talk about them.  So now’s the time to talk about the fact that my boyfriend of three and a half years and I broke up, and as of a few days ago, I’ve moved back to Michigan.

I’m sad.  More than sad.  But I also realize that maybe my ex-boyfriend would never be the partner I really needed him to be, and maybe I never would have been the partner he needed me to be for him.  That’s a hard realization after almost four years of dating someone.

I’ve also realized that I can feel bad about myself without anyone making me feel bad about myself, and I can handle my stuff alone, and I don’t need to be with someone who says it will be okay because I am the one who has to make it okay.

Part of me thinks that it’s really hard to judge a relationship on a time in our lives that was so difficult.  We moved from Michigan to New York, I started a new academic program, my boyfriend struggled to find work, my grandpa died, my dad died, after spending a year and a half living with my boyfriend’s dad, we moved into our own place, I got a job, that job ended, I got a job, and that job ended.  That’s a lot for anyone to experience in that amount of time.  You think that when you’ve made it through things like that, you can survive anything. 

Maybe things would have been different if we lived somewhere neutral, where neither of us was surrounded by our family and friends.

Maybe things would have been different if my dad hadn’t died.

Maybe, maybe, maybe.  Maybe not.

I’ve come to the conclusion, which I probably should have figured out a while ago, that I don’t think I would ever truly be happy in New York, even if I had the best job and the most loving and supportive significant other.  And I’ve been lying to myself for a long time, because when I have envisioned my future, I have envisioned it in the Midwest.  And I’ve wasted too much time listening to others put that choice down, even when my heart and my head both knew that, that was the best option for me.

I am filled with so much guilt and regret that I wasn’t there when my grandfather died and I wasn’t there when my dad died, and while maybe that guilt is misplaced, I don’t want to feel that way again.  And I don’t think I could take getting another call like I got when my grandfather died and when my dad died. 

I’ve never felt like New York was home.  I’ve been surrounded by millions of people all the time, and I’ve never felt so alone.  The pressure to be everything all at once is too much.  And the truth is, I wasn’t my best self.  I lost my best self in the constant wave of strangers that surrounded me.  While in Michigan I was a hustler, in New York, I wasn’t even average.

Somewhere along the way, I became totally couple focused.  It wasn’t just about me.  It was about us.  I put us first, instead of me first, which is stupid when the other person is focused on themselves first.  And when I started asserting my wants and needs, that just wasn’t okay. 

A relationship takes two people.  And if two people aren’t in it, it’s not going to work.  A lot was put on me, but chances are, this was inevitable, whether it happened now or later.  It’s just hard when you truly believe that, that person is the one, and then you find out that they’re not. 

It’s also hard because I was so naïve and so caught up in it all that I didn’t think this person was capable of hurting me.

When we laughed, we laughed hard.  And when we cried, we cried hard.  But lately, there’s been too much crying, and I’ve done most of it.

Right now, I’m not okay.  There are things I have to work on, mostly focusing on myself and putting my time and energy back into the things that used to make me really happy.

I’m not going to apologize for my illnesses, I’m not going to apologize for my dad dying, and I’m not going to apologize for being me.

Not only did I no longer recognize the person I was with, I no longer recognize myself.  We were two ships passing in the night.  Two strangers living parallel lives. 

I took second string to everything and everyone around me.  And I don’t want someone who is going to put me first as a favor.  I want someone to put me first because they genuinely want to.

I also want someone who isn’t going to rush me through my grief over my dad’s death, especially someone who has been through a loss of a parent themselves.

This is not where I thought I’d be at 30.  Two Master’s degrees and a PhD, uncoupled, unemployed, and moved home to live with my mom.  But things can only go up from here, right? 

I kind of feel like Annie in “Bridesmaids”.  I’ve hit bottom.  But as I always do, I’ll get up, dust myself off, and move forward. 

I am going to leave you with the lyrics to a song that I just discovered, that really speaks to where I’m at right now:

“I know they say, you can’t go home again
Well, I just had to come back one last time […]

You leave home, you move on
And you do the best you can
I got lost in this whole world
And forgot who I am

I thought if I could touch this place or feel it
This brokenness inside me might start healing
Out here it's like I'm someone else
I thought that maybe I could find myself

If I could walk around, I swear I'll leave
Won't take nothing but a memory
From the house that built me”

“The House That Built Me”, Miranda Lambert 

“I Feel Your Pain”: Four Words That Anyone Living With Chronic Illness Or Chronic Pain Would Like To Hear

A lot of us hope to receive compassion and understanding from those we are closest to.  However, most of us feel like we would never want our loved ones to get sick, and that’s the only way they would understand. 

But at some point, they will experience pain, too, even if it is just acute pain.  And it’s how they experience that pain that is really critical to those of us who deal with chronic illness and chronic pain on a daily basis. 

Recently, my BF had back pain.  He was laid up with an ice pack and it hurt him to move.  I tried to be supportive to him because he’s supportive to me when I’m in pain.

But this was more than that. 

He said, I don’t know how you do it all the time.  I knew where this was going, but I wanted to hear him say it.  Being in pain.

For him, one day of intense pain was enough to basically make his life miserable.  So multiply that by 24-7-365 and you’re looking at my life in a nutshell for the past eight years. 

Now you have to understand, my BF and I have been dating for three and a half years.  And we have pretty much spent every day together since we met. 

And maybe that’s what it takes.  Not just spending all that time together, because there are plenty of people that do that and still don’t have any understanding of what their loved one is going through, but to really be open and honest with each other.  

My BF is one of the only people that I am really open with about when I am in pain and where, because most other people just don’t want to hear it or just don’t care.    

Recently, it’s come to my attention that some people have viewed my behavior as aloof and standoffish.  But when you’re in pain all the time, it’s hard to be happy and cheerful.  I do the best I can to put on a brave face, but it might not come across that way.  And even if it does, I really have no other choice but to live with and through the pain.  Otherwise I would never get out of bed or be able to do anything.  But I get up in the morning, for the most part, and get myself to where I need to be.  And to me, that’s enough.  But for some people, that’s not enough.  But if they haven’t experienced pain, or they’ve never extrapolated their pain experience onto someone who lives in pain, they aren’t going to get it, and they aren’t going to understand that sometimes doing the best you can is really all you can do.   

And until you’re not in pain anymore, you don’t realize the negative impact that near-constant pain can have on your life.  It wasn’t until I got a very successful cortisone shot in my hip, in March that, not only myself, but others around me, noticed a distinct difference in me.  People told me I seemed lighter and happier.  And I am.   

Because pain is a drain on our bodies and our brains.  It takes everything you have to work through it.  And sometimes, no matter how hard you try, you just can’t.  And that’s okay.  There’s a time and a place for that. 

While my BF didn’t directly say I feel your pain, by saying that he didn’t know how I dealt with pain on a daily basis based on his experience of one day of significant pain, made me feel that progress had been made.  That maybe he’s one step closer to getting it than almost anyone else in my life. 

And it’s important to have that with the person you spend the majority of your time with.  It takes time.  And not all people know how to be empathetic.  Some people will never get there.    

Being in pain is more than a number on an arbitrary pain scale.  It’s about living life to the best of your ability in spite of being in pain.  Whether that happens gracefully or not, I don’t think matters.  What matters is when someone in your life, even if only for a day, gets a glimpse into what you are going through.

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.

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. 

The Gifts We Give Others And The Gifts We Give Ourselves

Well, I can’t believe that I’m writing this, but this is my 500^th post.  Incidentally, the 5^th anniversary of my blog came and went in April, and I kind of forgot.  That’s what happens when you are writing a dissertation and planning for the future, all at once.

I feel like I can say (and hopefully don’t jinx the fact that) things have finally started to fall into place for me.  I can’t disclose all of it right now, but I feel like I’ve found my niche, in life and in love.  I feel like I’ve found where I belong.   

I am slowing cutting ties in Michigan, which is harder than I thought it would be.  I will finish my volunteer position, which I have held for almost four years, next week.  As the next few months move forward, I will close out more and more of this chapter, as I am preparing for the next chapter. 

And it’s so strange.  I got sick here, and diagnosed here.  This blog began here.  I met my boyfriend here.

So many things have happened here.  I’ve been in this town for a total of 10 years.  A little more than a third of my life has been spent here.

And now I have to start over, make new memories somewhere else.

But I won’t be alone.

I’ve learned so much over the last several years, but mainly I have learned that there is life in spite of illness.  It can be very difficult at times, downright sucky, but it is possible.  I have had to accept my limitations, which isn’t always easy. 

And I’m learning to trust.  I had a lot of bad guy experiences following when I first got sick.  And it felt like it was me.  Like I wasn’t worthy, like I was damaged goods.  So I relied on people to build me up, who couldn’t possibly. 

But I have found that person.  And although I have to pinch myself some times to remind myself that it’s real, I can trust him.  And of course, I worry.  Of course there are moments when I’m sleeping 18 hours a day that I can’t imagine why he would hang around.  But I think were past that.  I think he’s here to say, and so am I.

So this is a reflection, but it’s also a celebration.  Somewhere along the way, I did something right.  I’m not sure what it was, because for a while it only seemed like bad things could happen to me.

My health is okay.  Not totally stable, but not careening through the universe at lightening speed, either.  I’m trying not to think too hard about the fact that when I move will come with it new insurance and new doctors. 

I don’t know who I’d be without illness.  That’s no longer an option.

Sometimes I don’t feel my age.  We’ll go out, have a drink or two, and I’m down for the rest of the weekend.  

But I also know myself better than I did before.

Sometimes I feel totally in control and sometimes I feel like I have no idea what’s going on.  Being sick has taught me that in many ways, we aren’t in control. 

It’s weird to think that illness may have been a gift.  It’s kind of a macabre thought.  But as I look back, I could see ending up insanely unhappy if I would have stayed directly on the path that I was on.  It took illness to make me see what was truly important, and what I am truly passionate about.

Now on the days when I can’t get out of bed, remind me that I said this.  But for right now, things are different than I expected them to be, and that’s not necessarily a bad thing. 

This is my story.  And this is only the beginning.

Just a note that my blogging may be less consistent over the next several months, as I finish my dissertation, defend it, move to another state, and begin the next chapter.  I hope I have loads of time to keep blogging, but if not, you know why, and know that it is only a temporary hiatus.

So please keep reading.

I owe so much to the community that has been created here.  So thank you, from the bottom of my heart.

This blog has been a gift for me.  You all have been gifts.  And I hope that I have helped or inspired or made you think or laugh or cry.

Letting Illness Win?

I hate the rhetoric of illness that talks about fighting and hard won battles.  I don’t think I’ve ever really liked it, but especially not since I got sick.

How can you battle something that you can’t control?  How can you fight against something that you didn’t ask for in the first place? 

Is it really a fair fight when eventually, in the end, illness will win out?

I really struggle with this.  Am I fighting?  Am I winning?  Am I losing?  What is going on here? 

The thing is, right now, I feel like illness is winning.

Lately the mornings are tough.  I wake up, and it takes me hours to get going. 

I’m tapering down on the Prednisone, and I hate it.  I want to be off of it, but it sucks. 

The pain creeps in.  The exhaustion is unparalleled.

I sleep for 12 hours and I could probably use 12 more.

The bed is too comfortable and I’m too tired to resist.  I am letting illness win by giving in?    

It’s 9:30 at night.  And I had such grand plans with my love, but I can barely lift my head off the pillow.  I’m practically comatose.

But he brings me water and my pills.  And mouthwash to gargle with and a cup to spit it into, because I think it’s gross not brushing my teeth, but I just don’t have the strength to get up and do it.

And these are the moments.

Is illness winning when expressions of love so deep are shown?  When someone is there for you so completely, and you just don’t have the strength to worry about how vulnerable a position it is to be in?

Clearly not.

But is it winning, and I have to admit defeat, when the only thing I can do is sleep?

If you’ve never experienced fatigue like this, it’s unimaginable.  It really is like swimming in and out of consciousness, because the sleep is so deep, and yet, not quite restorative.  It’s maddening.  

Am I letting illness win if I start treatment with Rituxan?  There are a lot of risks, but without Prednisone, I don’t know if I’ll be able to function.  So if I don’t try Rituxan, I risk not being functional enough to finish my dissertation and move forward with my life. 

I don’t want to feel like I’m fighting and battling an un-winnable fight.  But by not fighting, what am I left with? 

If I’m not fighting, am I just living? 

If I try and convince myself that I don’t need meds, will my illnesses simply go away and disappear?  I don’t think so. 

Sometimes we have no choice but to give in to the pain and the fatigue.  It’s not really a matter of listening to my body, because my body basically shuts itself off and I have no choice but to comply.

Am I fighting to win or fighting not to lose?

Sometimes Love Is Just Love

I’m not in a super awesome place right now health-wise.  Unfortunately, my RA seems to be back with a vengeance.  I’m having a lot of issues physically. 

It’s hard for me to use a knife to cut my food.  My boyfriend and I were out to dinner and I was struggling.  He grabbed the plate and the knife and did what I couldn’t do.  I was mortified.  I’m 27 years old and my boyfriend is cutting my food like I’m a four year old. 

This hasn’t happened since I first got sick.  I was home for the holidays and we were having dinner, I was sitting next to my sister, and she had to cut my food for me. 

Clasping my bra is a struggle.  Sometimes managing to get my coat on takes a ridiculous amount of time and energy.  Buttons of any kind are difficult to do with my somewhat useless fingers. 

And when I lay down, I feel like my bones are crushing in on each other.  Again, I haven’t felt this way since I first got sick. 

Lying down is so painful at times.  And when my boyfriend moves his body closer to mine, I don’t want to sound like I don’t love him, but him being that close physically is painful for me.

I don’t want it to be, but it is. 

And he can tell without me saying anything.  And he tells me he has an idea.  He leaves the room and comes back with two ice packs.  He places one against my back and the other between my knees.

At first I’m hesitant, not just because of the pain, but because of the physical and emotional closeness that ensues. 

It’s hard to struggle so openly in front of the person you love. 

It’s feels vulnerable in a way that nothing else does.

And I’m not good at accepting help. 

As frustrating as some of his quirks can be, in that moment, they don’t matter.   Nothing else matters.

He rubs the ice pack up and down my body.  Not in a sensual way, but in a healing way. 

And it feels like heaven.  Sometimes heat feels good, but when your joints are hot and angry, heat actually hurts. 

As I face the wall, I cry silent tears.  For my pain, for being sick, but most of all, for having this amazing person next to me who I’ll never be able to repay in kind. 

No one has ever done anything like this for me before.  Not that I’ve asked.  And while I tried to protest, I immediately felt better.  I slept with them (him and the ice packs) through the night. 

And the thing about it is, if this isn’t love, I don’t know what is. 

Really. 

But all of the insecure illness feelings come back in a rush of anxiety. 

This should be our lives 40 or 50 years from now.  Not right now.  These physical struggles disgust me.  I can’t hide them, but I so wish they weren’t happening.

And then I have to remind myself that things won’t always be like this.  There will be better days and worse days. 

I don’t know how to do this.  And I don’t feel that I deserve someone like this.

And sometimes, when someone does something so unselfishly, because they want to and not because of they have to or because of the recognition they’ll receive, it makes you want to shout it from the rooftops. 

Love is not just a noun.  It’s a verb.  It’s more than a word.  It’s an action.  And sometimes actions speak louder than words.

They speak volumes, so loud, that there’s nothing left to say.