Soup Time

Beloved’s answer to cold weather, damp weather or what have you is soup.  Home made read to go with the soup if you need extra comfort.

Soup, to me, means I’m sick.  I rarely eat it unless I’m sick.  It isn’t that I have anything against soup.  I just recall it being an item offered when I was sick as a child.  And so I’ve always felt that soup goes with sickness.

When I told Beloved this, he laughed and pointed out I have a chronic illness so basically I’m always sick so in theory I can and should have soup all the time.  Of course he was also on the midst of making a large batch of homemade soup.

He does that now and then.  Make a lot of soup because it’s easy to freeze and thaw as needed.  And, as he has pointed out, it’s warming and comforting not to mention healthy.  Plus, he will always say, it’s utterly convenient for a meal when you are in a hurry.

So when I had a bowl of soup earlier, I smiled.  After all I am sick, and certainly felling the effects of lupus, so of course soup is the answer!



One of Beloved’s oldest and dearest friends is getting married. The happy couple decided to write their own vows rather than have any of the honor, obey or sickness and health stuff. Instead they wanted something personal and meaningful to them as a couple.

They also wanted to avoid the whole topic of sickness and health because the groom has stage four cancer and said the last thing he needed or wanted was to be reminded that his life was going to be short. He wanted to celebrate his life, his love and the union he was forming with his amazing bride.

Beloved asked me, if I ever said yes to his question, how would I feel about the whole sickness and health line. Given I’m hardly a traditional girl and will never say to any question posed on a bended knee, he really has nothing to worry about. But the reality is I’d probably not have that line, or richer or poorer and such in any vows. They are empty words at the best of times.

At the worst of times, they serve as reminders to the cost people pay while they do this routine thing called living. I’d just as soon get on with the living stuff and not worry about the costs I pay on a daily basis. I manage to meet the bill, and so does Beloved, so who cares if one of us is sick or not? And it isn’t as if I’d be saying yes to his wallet anyway so richer or poorer in terms of finances is tacky.

But there won’t be vows said in front of people, or a white dress or a cake. I never could quite wrap my head around the need for all those trappings. Just the fact that we have each other is enough. The rest just seems like unnecessary stuff.

Today, Tomorrow And Yoga

It was recommended that I attempt a guided yoga class, to deal with some of my pain and stiffness.  So I gave this a go.  The lovely person on the phone suggested I run down to studio and interview the instructors and such.  And so I did.

I found a practitioner who is well versed in working with people who ave chronic illnesses such as lupus.  This was important because I’m not necessarily the best person to respect the limits of my illness so sometimes I need someone who gets this.

Gentle stretches and a lot of posture corrections took up the whole hour.  Not that I was clock watching or what have you.  It is hard to watch the clock when you are bent in such a way that your head is near your knees and your shoulders  need to be nowhere near your ears.  Sounds simple, but in practice it’s a whole other world.

Today reminded me just how limited some of my movements are.  Today reminded me how stiff I am and how used to carrying myself in certain ways to guard against pain has now become natural.  Tomorrow I am sure I will be reminded of this all again!

Guilt As Charged…And Self Accused

A friend of mine, who happens to be catholic, once told me that the underpinning theme in her life was guilt. She blamed it squarely upon her parents and her religion for they had taught her that if she was doing nothing she was guilty of a sin. She should always be busy. If she was complaining she was committing a sin for she should be considering all she had to be thankful for. I can’t say if that’s her religion or her parents, but I can attest that I too carry guilt as one of the underpinning themes in my life.

Someone once told me when you are chronically ill you feel a wide range of emotions because in a way you have to mourn for the self you have lost while you embrace the self that you are. What no one told me was that by being chronically ill, I’d be having guilt along as a side-kick unless I did something about it.

I used to feel guilty about being sick, about needing help. So I tried to not be a burden on other people and just go about being “normal”. The problem with being “normal” is that it required so much precious energy and strength that I was weakening myself too quickly and that allowed lupus to become more active. So then I’d be in worse shape than I was before. And now I have that to feel guilty about because I didn’t take care of myself and made things worse.

I had no idea how the dishes could make me feel so guilty. Not even a huge pile of dishes, just a few cups and plates and some cutlery. Sitting there, waiting to be washed, but I was resting. So they’d wait until someone else came to do them. And I feel guilty about that because of course I was doing nothing other than resting while this other person was out working and had come home to the dishes he had left in the morning.

The sound of the washing machine carries the weight of guilt for me, as does the sounds of timers going off. Because I know that if I hear the washing machine going while I’m resting it means that Beloved is doing more work than he should, just so I can rest. Which wouldn’t be bad, except I spent all day resting and still can’t do anything and he has already put in a full day of work.

Each meal he lovingly prepares for me used to taste of guilt. How can you be so tired, so ill that you cannot even prepare a light meal for a loved one or for yourself? How? It’s called living with a chronic illness. And the list of things that sounded, tasted, felt guilt is huge. You could easily be crushed by this weight if you let it fully settle upon you.

One day while I was trying so hard to be “normal” even though I was very sick, I decided to do some light house work and cook a meal for Beloved. So that he wouldn’t have to work so hard. That was the day I discovered that the washing machine does an incredible job of shrinking clothes and there is no way to scrape eggs up off the floor. Nor is there a way to quickly clean the spill inside the oven. Maybe the guilt managed to get shrunk in the washing machine, maybe it was collected and washed away with the spilled eggs or perhaps it was burnt off with the spill in the oven. But after that day I no longer feel guilt about what I cannot do when I’m physically unable to do it. Because that was the day that I learned Beloved has a very colorful and interesting vocabulary when push comes to shove. I also discovered that he goes an odd shade of purple at times

Seeking Grace From A Chair Or My New Lupus View

I spent today in a chair.  A reclining chair.  With access to television, music and a reading light.  I spent roughly six hours in a reclining chair today, followed by a ride in a car and now more time in a different reclining chair.

Oh sure I’ve gotten up a few times as needed.  But basically I’ve spent the day in a reclining chair.  And I’m tired of sitting down.  But when I stand up I feel like I could projectile vomit and maybe, just maybe win a gold medal for the distance I’d get on the projecting of said vomit.  No I’m not sick.  Not in the traditional sense.  This is a normal treatment day for me now.

The latest arsenal in my lupus treatment involves reclining chairs, burning veins, feeling horrible and being tired of not being able to do much.  I seriously underestimated how this treatment would make me feel.  I told everyone I’d sail through this.  I was wrong.

I aced the whole getting into the chair, getting my IV hooked up and settling down with some reading material.  I assured the nurses I was fine, no need for ice or a cool cloth.  Ha!  Shortly after they started the IV my arm got a tingle of warmth.  Okay so it was new, but I had this.  Until the tingle went from just a tingle to a deep burn that had me wanting to rip the IV right out.

A nurse stopped by at that moment.  The moment I realized I didn’t have this and offered me a cool cloth as some comfort.  I wish I had graciously accepted it instead of the mess I was.  Still she provided me with the cool towel and some lovely ice chips.

And the burn traveled up until it seemed to fill my entire arm.  I could almost visualize it burn my veins nothing but ash.  Cooked from the inside out.  And just when I thought my arm would surely burst into flames or at least be covered in open blisters the treatment was finished.

Who knew it would take something so awful to make me more healthy.  Yep that’s right, I am trying to regain health and control lupus with toxic poison that has the nurses and doctors taking precaution when handling the treatment or me.

Now I could be really upset about this, because let’s face it if you are using something that’s toxic there will be side effects down the road with it, but instead I want to work on handling this with grace and dignity.  I know I won’t always be successful.  I know there will be anger, pain, despair, and giving up thoughts, but I still wish to master this with grace and dignity.  To remind myself that I made this choice, this treatment and therefore I can also choose to end it and face the reality that lupus is destroying organs faster than science can find a cure or way to slow this down.  But I’ve always banked on science so I will give it some more time, grit my teeth and be thankful that is isn’t the full strength poison hat some people face on a more regular basis.

Something’s A Little Off

I’ve been feeling a bit “off” again.  Or is that the off is on again?  It’s all rather confusing, but that’s life with a chronic illness such as lupus.  You can be zipping along managing to be “normal” and then Bam!  You hit a wall. A wall of exhaustion.  A wall of no can do at this moment.

I’m not exactly at the hitting the wall point just yet.  It’s more of the warning stage.  The stage that basically says if you don’t heed this warning bad things will come.  Bad things as   in not able t get out of bed bad thing.  And bad things as in no energy at all to do anything and incredible pain that doesn’t seem to end.

I will be the first person to admit that far too often I try to push past this stage.  I try to be a type of super hero and be immune to this.  Alas, I’m not immune to my own messed up immune system.  Rather I’m supposed to manage a gentle and delicate balancing act with my hyperactive  immune system.  Let’s just say I have yet to get and keep balance!

Id like to think that as I get more mature I get a little smarter than before.  Meaning that I can now notice that I feel “off”.  If I am wise, then I will heed the warning  and ward off the worst of an intense flare.  Well friends, I’m old enough to know better and still young enough to do the opposite of what I should.  But I have a secret weapon in my life-my support team who are getting better at not letting me push beyond this stage.  For this I am grateful.

How about you?  Are you feeling a little off?

Crosses To Bear or How I Was Told I Had Lupus

A specialist once told me we all have crosses to bear in life. He proceeded to tell me that lupus was my cross to bear just as hair loss was his. Somehow this just didn’t seem fair back then. To be honest it still doesn’t seem fair.

I can appreciate that everyone has his/her own trials and tests in life. And no two people will experience things exactly the same way as perception is a funny thing. We are shaped by our experiences, understanding and interpretation of words, sounds and sights. So it is possible that to this doctor his hair loss was just as traumatic and terrifying to him as hearing I had lupus was to me.

There are days that lupus is a “minor annoyance” in my life. It’s there, but it doesn’t impact my daily life too much. I can manage doing what I want to do without too much concern. Those are the days I understand that my specialist’s comment best.

There are days where lupus is in full control of every outcome. Including will I be able to get out of bed, or what happens if after I’m out of bed I have no more energy? Those are the days I want to march back into the specialists office and show him that this cross is much heavier, much harder to bear than how I perceive his. Of course those are the days I haven’t the energy to actually do anything, but it’s the thought that counts right?

Some else once told me that if I had to choose between my cross to bear versus another person’s I would gladly pick my own up again. I understand part of that in being that we do tend to go back to that which we know. But I’m somewhat certain I could find a way to rock a scarf or custom wig better than how I manage to deal with the fact that some days I just can’t do things.

Does lack of hair make you feel inept? Inadequate? Worthless? I struggle with these words, words I say to myself on the days when I really should be showing the most compassion to myself. I know it’s unfair of me to have this type of self-talk going on, but I suppose I repeat what I have heard said from society in some way or another over all the time of living with lupus.

If I were in the same position as that specialist so long ago, I would hope I would respond with compassion. I hope I would be able to reach out and create an environment where the other person could feel s/he could lay down that cross, if only for a moment, or at least take a rest while we find a way to make things work better.

Granted I know that there are dangers to caring too much, to worrying too much and becoming to close to things. However, in that moment, all those years ago, what I needed to hear most was that yes lupus sucks, and yes we will find a way to work through this. Instead a felt alone, and also somehow responsible for soldiering on as best I could without giving into the exhaustion or pain. In other words, lupus was diminished and it was up to me to carry on trying to appear “normal” because after all we each must carry things that are heavy for us.