Being diagnosed with Lupus was weird, that’s the best word I can think of to describe it.  

I had heard about Lupus, but I honestly never paid attention, I mean it was something very isolated that a very little amount of the population was diagnosed with it, so thinking of me being part of the little group didn’t sink in for a while.

I can’t lie, having a diagnosis was great! At least I wasn’t crazy or a hypochondriac. A win, so many people spend years doing tests, seeing all kinds of doctors, only to be told you have nothing, just lose weight, think positive, given antidepressants, and then just ignored.  

When it was time to find out what it was, and I’m sure as all of you know technology is a blessing and a curse, You, your friends, family, me, and everyone with access to doctor google have gone down the rabbit hole. 

I can tell you that I was terrified, I mean that sounded super serious (it can be) and I was not even forty, my son was still in college, I had so many plans for the future. Did this mean my life was going to be cut short? Or worse, was I going to end up not able to do anything on my own, having to get organ transplants and a whole other list of complications that are entirely possible?

Have you ever wonder what is like to have to give up most of the things that bring you joy? And they were mainly the little things that don’t even cross our minds, things like going to the beach, gardening in late spring and summer, just spending time outdoors on sunny beautiful days, things you like to eat, do the workouts you enjoy, socializing, things that you don’t even think about, they are just part of life, are not recommended and if you do it, they come with a very high price you have to pay.

Well, I was in denial for a while, Refusing to accept the diagnosis was easier than dealing with the truth, and then be willing to do the changes required to slow down the progression is another thing on its own.  

You go through all the stages of grief (denial, anger, bargaining., depression, acceptance), and it’s difficult to understand and accept that the person you are mourning is you.

Plain and simple, the person “you” that existed has to change and in a way die to be reborn someone else.  And I hope you can imagine how hard this is.

Things change from one day to the next, and you jump from one stage of grief to the other in completely random order.  I can be depressed one day, try to bargain with God, (or whatever higher force you believe in), next day accepted, only to be back to be on denial again, and just be angry, especially if I get to have a couple of good days in a row.  And this cycle goes on and on and on.

I try to find the best way to deal with things that are not comfortable to talk about, or accept, my go-to do is to use sarcasm and a dark sense of humor, but even that sometimes isn’t enough, and I think I said this before. The little things are the ones that always break you. 

Most of the time when I  think I am doing fine, that I accepted that I can still do a lot of things, I just need to find other ways to do them and it all be ok.  

But then thinking of everything I have to consider before doing anything, just to try to avoid paying for it for weeks, having to pretty much hibernate all summer, and tell people that you are fine, that it’s ok for them to enjoy, and it is if we are honest having someone else have fun doing things I can’t make any difference besides me feeling guilty for them not being able to enjoy them.  I have never understood people that believe that if they can’t do something then others shouldn’t do it, that’s BS.

I learned a long time ago that life goes on whether you are part of it or not, and that nobody is necessary, wanted yes, but not necessary.

And now I had to accept that is 100% my responsibility what I do and how that affects me and the people I care about.  

It took a while to accept that the little spoon of arequipe (dulce de leche), as much as I loved it cost me greatly, and it wasn’t just the pain on the following days, but the damage I was doing to my body.

Eating things that brought me joy for 5 min were all of the sudden not worth it, and don’t get me wrong, the temptation is there, ALL THE TIME!  But at some point, you just have to accept that is not worth it.

The hardest part, at least for me is the mental health side of this.  Being independent and reliable has always been super important, and now I am learning that is ok to not be able to do everything, that I can not make plans a month in advance, especially not on days when I am feeling good, having those days give you a feeling of everything is back to normal and maybe I am healed! 

Well, I am not.  At least not yet.  I have faith that this can be reversed, but it’s going to be a long road, getting here was not overnight, now it’s time to work on fixing.

I hope that at least some of you could relate to feeling guilty for not being there for others, or for being in so much pain that you have to negotiate with yourself to go down to the stairs, or simply getting out of bed, sometimes even being in bed, and at the same time being too proud to ask for help.

The biggest lesson I’ve had is that dealing with our inner demons is a 24/7 job, that everything in life is a chance for a lesson, and that sometimes you don’t want that lesson at all, but in the end is all about what you make of it. Also, there are battles you win and others you lose, but everything and Everything has a consequence and the only one that can change anything is you. 

Thankfully as we were having dinner I was showing my new designs to my husband, and one of the signs/pillows I am making says that.  “I know my Limits. I just choose to ignore them”, and he suggested I should write about it since it’s one of the things that I struggle the most with.

The thing is, I have days that I have slightly less energy than a healthy person, and these are the days I like to push my luck. 

I never thought of waking up feeling beyond tired, don’t get me wrong,  I have been tired, I was a teen mom, I worked, took care of my kid, and when he was very young I worked events. On a weekend I’ll be back home around 4:30 to 5:00 am.  I was the first person at the venue and the last one to leave.   And if you have kids or know someone that has kids, you know that they don’t sleep in! They are up and running with a full battery no later than 7 am.  I had regular business hours during the week and band rehearsal one day a week.  I didn’t have to go to the rehearsals every week, but if we had a big event I had to. 

I didn’t sleep much, didn’t eat great, and had too much on my plate.  I was tired a lot! 

But nothing like what I feel now.   Waking up feeling that you are made of lead and having so much pain that you are not even sure what hurts exactly since everything hurts and there is no way to pinpoint it to a specific area, you are just in pain.

Having a balance is really hard because I never know for sure how I am going to feel, I can wake up feeling great and two hours later be completely drained.  I also know that if I do “too much” I will pay for it, sometimes for days, but if I don’t finish doing what I need to do, is just going to become one more thing on a list that grows every week.  

The way I see it and justify it, at least to my self is that things don’t stop accumulating, the world doesn’t stop just because I can’t do things that need to be done, and since there is no way to predict exactly how I am going to feel, I need to take advantage of those moments. 

I love to cook and bake. If I was making burgers I seasoned the beef, had everything ready, I even made my own buns. And the food is one of the ways I show love. 

If I would have to think about this a few years ago, I would still say that I wasn’t doing enough, never worried how much work they took, I just did it.  Now I have to plan ahead, prep as many things when I have the energy, and try to plan as if the next day I was going to be down. 

Also, I have an immunosuppressant injection every Tuesday (I do mine at night before going to sleep), sometimes it goes smooth, just normal discomfort, other times I have awful nausea and I feel horrible.  Knowing this I try to plan ahead as much as I can, I try to leave food made for Wednesday, leave the kitchen clean, make important calls, and do anything else that needs to be tackled sooner rather than later. 

I know I’ll be in pain, I know I’ll be drained to a point that I can fall asleep while seating and waking up feeling as tired as if I didn’t sleep for days, but I just can not do things. 

Accepting that you have a limited amount of energy or a limited number of spoons as it’s better explained by Christine Miserandino  https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/  in the post that I just linked. 

Having to accept that you are no longer a person that can do everything, is hard, like very hard.  I think about when people age and you go from being young, attractive, and full of life to someone that chooses to stay at home and watch a movie than going to a bar, you start becoming less relevant, and in many ways we become invisible.

I hate being unreliable, I can’t commit to many things, because I just don’t know.  All I know is if that is something important, I’ll just ignore all the warning signs and do it anyway.  

This goes to so many of us, not just about having energy, it goes to health, it goes to toxic relationships in our lives, it goes to all kinds of addictions.  I admit, that I am kind of addicted to TikTok, I didn’t want to believe I was going to be so into it, but here I am.  I have people I follow that I look forward to their contents, but if we are honest, it’s not healthy for us, especially if you stay up till late.

Many of us have been in bad relationships, and we are way past what we thought would be the things we would not put up with, but we stay.  Only to see how the line was crossed a long time ago, how you passed any limit you knew was acceptable for you, and just stay regardless of the cost.

There was that Job that cost you friends, relationships, health and you knew you should have left it, but you stayed.

Having limits is something easy to see and set when you are looking from away, but when you are the one living it, we all know we pass the limit and choose to ignore it.