Sarcoidosis and the Worth of Life

The past couple of weeks have been brutal. I am a couple weeks past due for my infusion because of a paperwork screwup somewhere and my body is in full rebellion. At this point in my life, I sometimes wonder about the value in prolonging the life of someone with a chronic illness. Seriously.

I once got to see a bill for my infusions and it scared the crap out of me. The numbers were just crazy. And I always feel bad about the weight my illness puts on the "system". What is life worth, really? And what is the balance? If you think about what you mean to the world - to society - and try to weigh it against what it costs to maintain your life...

In a week, I have two or three great days of health. The rest of the time I am depleted by one of my medicines. Every eight weeks, I get an infusion and feel amazing for about three weeks. "Amazing" as in even my weekly med doesn't bring me as far down as normal. Right now I'm feeling worn out from the one thing I managed to do today - walk over to the market for things to make tea and a snack. I had to rest for a couple of hours before I made the tea. All I've done with the rest of my day is lay down and try to fight the heavier-than-usual fatigue and make phone calls about the screwed up paperwork. So I am just questioning a lot of things.

I'm not a mother and I no longer am responsible for the nieces I helped raise. I'm no longer a wife or life partner. My contribution to society overall is fairly limited. So what is the value of life?

Today has just been really tough. I'm sitting on top of all my feelings wearing this crown of self-doubt and trying to talk to God about it all. Sometimes, though, the higher I sit on my mountain of feelings, the further I feel from Him.

What is the value of life? That's what I'm going to be thinking about when I lay back down. And I am going to have to lay back down because just sitting up long enough to post this has worn me out again.

I really hate this fucking sarcoidosis. I hate the way it makes me feel and I hate the way it makes me think - when I can think. I hate how it has come into my life and just bulldozed over everything that makes me sure of my value.

Peace
--Free

Struggling and Coping

This morning on Twitter, I caught up with someone I connected with long ago during my first days online. This is a smart, go-get-em kind of woman. It seems that she, like me, is going through some trials. I know that she, like me, is going to come through just fine. But, probably, for both of us - for anyone- it`s not knowing how strong you are before a struggle, or that you will be better afterwards, it's that whole period of 'getting through' it. The being in it. The whole truth of these periods of struggle - which always feel like a battle to hang on to the best of what you are - is that you have to go it alone. The only thing you have is your faith and your trust.

So, to my buddy from way back (you know who you are), I don't know what you're going through. I don`t know how you feel while  you`re getting through, but I know that you can make it through.

My current struggle? Fatigue from and exasperation with this damn sarc. Trying to focus through this haze that clouds my mind every time I attempt to write or pray or just think. I figure I'm getting a couple hours of energy each day (at the most) to spend time enjoying my family, keep up with the blog, and taking care of myself. The rest of the time, it`s a terrible effort to do anything. Sleeping doesn't help because I'm not tired. I'm not tired, I'm simply fatigued and fogged.

I need this on a t-shirt

When you get an odd disease, one that's not so recognized and understood in general, your doctors do all they can to fight the progression. You get medicine to keep you alive - and, in my case, to keep me from walking into walls. What you don`t get is lessons in how to cope with the damage that`s been done. Or how not to be so irritable that you begin to hate yourself.

They got a drug for brain fog?

No decent person would expect someone on crutches to run, a blind person to drive, or a mute person to "speak up". It's tough for people to know that I have a disease that comes with its own issues. I don't realize that I'm annoying because I might be asking you the same question now that I asked 10 minutes ago. If I get quiet and still in my body because that helps my mind get quiet and still then, yes, I might get edgy when you pierce that quiet and stillness with a lots of loud noise.

Stop. Please. Or at least PAUSE.

 

Because, while my disease is being treated, no one is teaching me how to cope. I am learning as I go and the going gets ugly. Having to concentrate so hard when I do anything - drive, clean, write, read, pay bills, make appointments- is tiring.

Before this disease, writing was my coping therapy. I wrote short stories and long stories and even novels and, whether they were never going to be read by another person, they were my therapy. Now I can`t even keep grasp of one thought long enough to weave it to another. Before, if I wasn't writing, I was reading. I still read, but listening to audio books is better because, somehow, hearing stays with me longer than reading. If I don`t get frustrated because the audio is more 'noise' than I can take sometimes.

I can deal with most of my symptoms, but this fatigue piled on top of it all is too much. Not being able to sleep well - or to feel rested when you do sleep - and not being able to find the energy to function when you are awake is just too much. I have been meaning to clean the bathroom for over a week now. I did spray cleaner on the shower walls yesterday. That's something. I rinse today. Maybe.

So. I am struggling, but that in itself is a positive. Struggle is action. Prayer is medicine. God is good. This struggle, this fatigue, this strain are just symptoms. They are not the whole of me. My main coping mechanism is one that can't be polluted: faith. I have faith that this, all of this, will pass.

Peace
--Free

P.S.: I promise that the whine session is now over. I'm going to try to get back to posting reviews asap. I have just finished a couple weeks of trying out and using 3 products. Just have to get my notes together. You now know how that will go!

**RANT** Invisible Illnesses

Lord forgive me, but there are times I wish that I had a more visible illness.

You know that look you give someone who whips out their "Handicapped" placard, pulls into a reserved parking spot, then hops out of their car with the agility of Mick Jagger at 20? Sure, you know. THAT look. Well, I used to give people that look. Used to. Not anymore.

Thankfully, I don't need to park in a reserved spot so I never get "the Look". What I get is ignored. Ignored might be something that some disabled people long for, but not when it's worse than a smack in the face. Or when it makes being sick worse than "just" being sick.

Because I don't have an illness anyone can see, I don't get to park in any of the reserved spaces at the store or in life. Nope. Those special "life spaces" are reserved too, you see. Since I look like I can trot through life like a young Mick Jagger, there are lots of things I get a dirty attitude for:

• Fatigued? Well, that's just too bad. I look too healthy (and might I say "gorgeous", or maybe not) to be fatigued. Fatigued from what? I look perfectly healthy. I should be able to wind up every morning and put the Energizer Bunny to shame!
• A little down and blue? Well, none of that pity-pot business for me, my friend. At least I don't have ~insert disease #1 her~ or ~insert another disease~, right? My life is just perfect. I can get any job I used to, or go back to school to learn another job. Oh wait... I'd need to have better short-term memory for that. And then there's the whole fatigue thing. You know the problem I shouldn't have. We won't even talk about the stigma of being sick while looking well and fine. We really won't discuss any of the rest of stuff that can beat you down like Tyson in the ring. All those things like housing and food. Affordable housing and food. 
• Not counting my blessings. Because, you know, I don't have one of those other diseases. And, besides, the one I do have doesn't seem all that bad. And, not that I care what idiots think, but I do count my blessings. I wish I could add more people to the list of blessings to count. (Okay now, that was just plain snarky. Sorry.)
• Discouraged ever now and then? Well, that's just not allowed. Even though I struggle to piece back together some kind of a life. Even though I can't write as well as I used to (the one thing I was good at), and even though I wonder if I'm ever going to feel "normal" again. None of that matters. Especially when other people make it all look so easy.

I could go on. And on. I won't because then I'd get accused of being bitchy. I'm going to have to ask my docs if "bitchy" is a symptom of this disease or a symptom of most invisible diseases. A symptom brought on by, maybe, those other things I mentioned right up there. I'm pretty sure if I ask the wrong person, I'll get the "parking space" look.

So, yes, while I count my blessings and ward off my own bitchiness, I do sometimes want to wear a shirt like this one:

Cos that's what people think anyway
(get this shirt here)

And, by the way, you can hold the advise about how to handle illness. I don't want to handle it, want to beat the crap out of it. And, anyway, no one else - not even someone with the same disease - can tell anyone else how to handle their illness. I think that any disease/disability - no matter how "strong" someone is or how well they seem to handle it - is a personalized kind of struggle. My struggle has my name on it, not anyone else's. And, okay: that doesn't really explain the "bitchy" part. (I'm seriously going to have to ask a doc about that!)

Being sick made me more "natural"???
(get this shirt here)

 For those of you who don't know, I have another problem:

Part of it is this tho

It's true. If I'm not smiling, I look like I'm off to start trouble. That's why I smile so much (and sometimes look like I either have a great secret or better meds). Mostly. Part of it is (sometimes) just this:

I do have a flaw (yes, just one) of my own: I have a problem hearing other people complain about their little aches and pains when some of us are dealing with bigger stuff. See how I fell right into that whole "your problem vs my problem" thing? That's what happens when I turn my head and you see my other face.

So, yeah. This is a shout out to you all who are healthy and well. Don't make those of us with an invisible illness have to wear our bitchy face just to repel your "parking lot" attitude.

Peace

--Free

P.S.: Again, I'm thinking of Perry. I used to have him to vent all of this to. I guess I'll be using the blog to sometimes "talk" to him.

Milestones

We all have our lives marked in milestones. It starts with our parents tagging our achievements from tooth-cutting to first steps, first this and that.

The first real milestone I waited for was getting my period. Idiot. I lived in agony for two to three days a month for year afterward. Anyone around me lived in agony for a few more days each month. Then came the usual markings for most of us:

• 16th birthday
• First kiss (or serious crush)
• Driver's license & first car
• Graduating high school
• Standard college or the college of life
• Love and Marriage and sex (in whichever order)
• First house or other major investment

And on and on and on.

Then there are the other things that can count as being profound to our existence. For me, having death take away someone I loved showed me how real life can be. I sometimes think that only death can do that.

Do you remember the first time someone broke your heart? Or the first time you did some awful thing that you hope never comes to light?

I remember the first mistake I made that will haunt me for all the days I breathe.

All those milestones are from when I was younger. These days, I take some things more serious and other things don't touch my soul at all. 

The other day, my great-nephew grabbed my face and planted a big wet, snotty kiss under one eye. That was a moment that I never want to forget. Being cherished by a child feels different to me now that I am older.

The milestones that make me shake my head and think of my parents are the ones they warned me about: "Just wait til you have to squint to read anything." Or: "Help me get up from here, and remember that someone will have to help you one day."

I called my sister from Walmart the other day and had her laughing herself into a crying fit.

"Girl, I am in here looking for the Ben-Gay, and you won't believe how old all these people look!"

"You're old(pause)er."

"Not old like them. They look and act old."

Said the woman slinking down Aisle Three, trying to read the labels on jars of muscle ointments.

It probably makes me sound mentally unfit to say that I sometimes want to cry when I can't just spring right up from sitting cross-legged on the floor. Some months ago - too long ago - I had to tell a date to adjust his embrace because I was getting a crick in my neck. Gone are those acrobatic days of magic when I only had to worry about being respected afterwards. These days I'm lucky when I have to worry about it at all and, when I do, the biggest worry is that 911 might have to be called at some point. How embarrassing would that be?

But.

I am so very thankful to still be counting milestones. 

My sarcoid is back and acting the fool (if you can't tell by the poor composition of this post), and I am just sick to death of it. If I weren't at least getting my figure back from the months of prednisone, I might actually lose a little more of what's left of my mind.

But, again, I am so glad to still be here, bitching and complaining about it all. I'm not looking for the milestone that will be marked by a final church service.

Peace

--Free