Click the link above to hear the song.
The Sound of Silence
by Paul Simon
Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence
In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a streetlamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence
And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
No one dare
Disturb the sound of silence
“Fools” said I, “You do not know
Silence like a cancer grow
Hear my words that I might teach you
Take my arms that I might reach you”
But my words like silent raindrops fell
And echoed in the wells of silence
And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said “The words of the prophets
Are written on subway walls
And tenement halls
And whispered in the sounds of silence”
So...I've been on radio silence for the last few months, or maybe I should say blog and Facebook silence...at least in regards to what's happening with me and lupus.
Oh...you hadn't noticed?
That's okay, you're not the only one.
Or...maybe you did notice, and you really feel like this...
Sometimes those who do notice your silence are those who you would least expect to notice it. A local Facebook friend who I occasionally bump into at the market sent me a message last week asking if I was okay. She said she had noticed I hadn't been making many posts in the last few months and she just wanted to check on me.
You know that adage, "no news is good news?"
Well...that's not always true.
The reality is that it's been a rough few months. I'm dealing with a bunch of ongoing issues related to lupus, and it's just really been draining me. I've also found some of the online support groups to which I belong to be...less than supportive. The realization dawned on me that a lot of the folks I make it a point to check up on on a consistent basis...never ask about me. Ever.
And I'm sure I'm guilty of that, too. So if you're reading this and you feel I'm too self-focused to pay attention to what you're going through...I'm sorry. Really sorry. I try to be sensitive to the realities that others are experiencing. I do care about what you're going through, no matter what it is. Sometimes I just get overwhelmed.
You have permission to slap me.
Okay...now that I've gotten that off my chest...
The last couple of months, I've required a lot of additional steroids, by injection and by increase in oral dose. My rheumatologist has decided that I probably need to get my rituxan infusions every four months instead of every six months. Part of the reason for taking rituxan is to lower my need for additional steroids. I seem to start flaring more about 4 months after a round of rituxan, so it makes sense to try taking it more often and see if my need for the additional steroids decreases.
I'm starting a round of rituxan tomorrow morning. A round consists of two 1,000 mg doses, the first on day one and the second on day fifteen. Prior to the rituxan being infused, I receive IV benadryl, IV pepcid, IV steroids and anti-nausea meds. These are all to help prevent a serious reaction, which I've had in the past. Last time, it appears we finally got the premed cocktail right, as my reaction was minimal. The side effects keep me in bed for about a week after each treatment, and leave me feeling weakened for a couple of weeks after each treatment.
Each treatment takes 6-7 hours, if there are no complications. The infusion center at the women's hospital in Pittsburgh is not a very pleasant room. The staff are wonderful, but the room itself stinks. There are no windows. There are 8 chairs. There is not room for you to have a guest, but we wedge Ben in there anyway. There is no privacy. You can literally reach out and touch the person being infused next to you. Which is really embarrassing when you're moaning from nausea and barfing into a garbage can. You can't rest because inevitably Mr. Yakypants will be on his cell phone the entire time he's there. If you have GI problems coming out the other end, you have to parade in front of the other 7 inmates and use the restroom which is in the center of the room. And not very sound proof. Or smell proof.
BUT...
Sometimes the infusion center is over-booked. When that happens, they send patients downstairs to the women's cancer center for infusions. The women's cancer center is wonderful. Each patient gets a small private room with either a bed or a nice recliner and an extra seat for a guest.
Guess who gets to be infused in the women's cancer center tomorrow? That's right...me. Thank you, Lord.
And infusion center staff...I do love you all, but I hate that room. And you do, too.
Oh, I'm sorry. You think I sound a bit snarky in this post...
YOU'RE RIGHT.
I'm really looking forward to getting the rituxan because it will help some of the major symptoms I'm having right now. My joint pain has been off the chart recently, especially my hands and fingers. I'm having trouble using a pencil or utensils. I'm dropping things all the time. My fingers are very swollen, especially in the morning. My fingers lock up and it hurts to move them.
My CNS/neuro symptoms have also been increasing. I have a very hard time concentrating. Reading a short article is hard. Reading a book is out of the question right now. I forget things all the time. Important things. I have no memory of certain events. I do weird things, that seem funny afterwards. Things like...I'm washing the dishes and I need to turn off the water. So I walk over to the radio and turn it off. Then I stare at the sink and wonder why the water is still running. So I go to the sink and turn off the light switch next to it. Again, I'm puzzled why the water is still on AND why the radio is now off. And I've had more hallucinations, but just visual ones this time. I had an MRI a couple of months ago that didn't show any big problems. Then I had a more specialized test on my brain, called a SPECT scan. It showed some decreased function in the basal ganglia region, which is has been shown to be a precursor to more serious CNS lupus issues. The remedy...rituxan. So, yay for that. I've also lost feeling in my left leg, from just above the knee to the middle of my foot, on the outer part of my leg. It's such a weird sensation. Trying to walk (or run) on a leg like that takes concentration. Again, the neurologist says that rituxan should make that get better. If it doesn't...more poking and prodding.
I'm still under the care of a retinal specialist who is monitoring the retinal maculopathy which may or may not be related to lupus. Every three months, I see him for what I call "the freaky eye tests." So far, he's only seen minor changes beyond the original damage that was discovered in 2012. So, that's good! In fact, this time I get to go six months until I see him again.
I'm still being followed by the nephrologist due to proteinuria (passing protein in my urine) and hematuria (passing blood in my urine.) If in fact I do have lupus nephritis, he feels it is stage one or two at this time and the treatment for that is...no change in my current treatment. And if it were to worsen, the drugs of choice are...rituxan and cellcept, which I already take. Oh, and high doses of steroids, but WE WON'T BE NEEDING THOSE...RIGHT BODY?!?!
If you haven't seen me for a while...I've lost some weight.
Actually, that was taken about a month ago. Thankfully, the practically constant diarrhea has stopped. Unfortunately, so have regular bowel movements. Sorry if that's TMI, but hey...it's a pretty vital human bodily function. I've gained about 7 pounds since I'm constipated all the time. Go ahead...make that joke...you know you want to...yep, now I really am full of &#@%!
I've now had an active GI bleed for almost a year. Or, at least every stool sample I've had tested for the last year has been positive for blood. I had a CT scan and MRI/MRA done last summer which showed some inflammation in my descending colon, but a follow up colonoscopy (three months later) showed no inflammation. But I'm still bleeding somewhere. Gastroenterologist #1 just wanted me to take a pill. No thanks. So, I decided to see another gastroenterologist for a second opinion. I'll be having an endoscopy on May 1.
So that'll be a fun three weeks...rituxan...endoscopy...rituxan. Along with appointments for blood work, pcp, hematologist, etc.
The hair on my body has almost stopped growing. Which is great in that I don't have to shave much at all now,(and I used to have to shave my legs and pits daily) but it's also not normal. The hair on my head is getting thinner and thinner. Sigh.
I'm still dealing with tachycardia (high heart rate) at times...
Hey, great blood pressure here, though! It's usually about 80/55, so this is wonderful!
And...my endocrinologist and I are still trying to work out the whys and wherefores of my WONKY hypoglycemia. I routinely (like daily) get lows in the 40's and 50's. This photo shows an extreme high, too, but I don't usually get those unless I've been bad on purpose (which I had been this day. I ate a slice of homemade bread.) The big issue seems to be that no matter what I eat, or how little my blood sugar rises after a meal, it falls very quickly. I can rise to only 100 or so after a meal, which is a very small rise, and then plummet to 40 only twenty minutes after a sensible meal. It's extremely frustrating. And it seems to be worse when lupus is flaring, which is interesting.
I had to have another repeat mammogram, but everything looks OK at this point, so praise the Lord for that! I'll get another one in July.
Not done with the "ologist" run down yet...sorry.
Not sorry.
Hematology...
Anemia is worsening, which is almost surely related to the GI bleed, at least in my mind. I have anemia of chronic disease anyway, but this is getting closer to transfusion levels, so something else is going on. Any my iron and B-12 levels are normal...another indication that either lupus is really liking my blood or I'm bleeding somewhere. My ferritin levels have been really high, which is odd. The rheumatologist says that can be a marker of inflammation, so I think that must be what's going on.
Raynaud's has been pretty rough the last few weeks, too, related to the flare I'm having.
I'd like to thank our insurance for denying Viagra (sildenafil, also known as Revatio.) They say I'm not a man, so how could I possibly need it. It helps open the circulation to all parts of the body...we'll keep trying to get it approved.
Deep breath...
again...
again...
(I hate memes with typos...Sorry.)
1 Peter 1:3-7
All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.
So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.
(Again, a typo :( but I love this verse and I love apricot roses)
Click the link above to hear the song
Come out of sadness
From wherever you've been
Come brokenhearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow
That heaven can't heal
Earth has no sorrow
That heaven can't heal
So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You're not too far
So lay down your hurt
Lay down your heart
Come as you are
There's hope for the hopeless
And all those who've strayed
Come sit at the table
Come taste the grace
There's rest for the weary
Rest that endures
Earth has no sorrow
That heaven can't cure
So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You're not too far
Lay down your hurt
Lay down your heart
Come as you are
Come as you are
Fall in his arms
Come as you are
There's joy for the morning
Oh sinner be still
Earth has no sorrow
That heaven can't heal
Earth has no sorrow
That heaven can't heal
So lay down your burdens
Lay down your shame
All who are broken
Lift up your face
Oh wanderer come home
You're not too far
So lay down your hurt
Lay down your heart
Come as you are
Come as you are
Come as you are
Click the link to hear this gorgeous song
oh, great god, be small enough to hear me now
there were times when i was crying
from the dark of Daniel's den
and i have asked you once or twice
if you would part the sea again
but tonight i do not need a fiery pillar in the sky
just wanna know you're gonna hold me if i start to cry
oh, great god, be small enough to hear me now
oh, great god, be close enough to feel you now
there have been moments when i could not
face Goliath on my own
and how could i forget we've marched around
our share of Jerichos
but i will not be setting out a fleece for you tonight
just wanna know that everything will be alright
oh great god, be close enough to feel you now
all praise and all honor be
to the god of ancient mysteries
whose every sign and wonder turn the pages of our history
but tonight my heart is heavy
and i cannot keep from whispering this prayer
"are you there?"
and i know you could leave writing on the wall
that's just for me
or send wisdom while i'm sleeping,
like in Solomon's sweet dreams
but i don't need the strength of Samson
or a chariot in the end
just want to know that you still know how many hairs
are on my head
oh great god, be small enough to hear me now
Please God, let this round of rituxan kick in relatively quickly so I can feel better...and run...I miss our time together during my runs, Lord. Restore that fellowship time unto me, please...in Jesus' name.
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Click the link to see this super cool video my running friend Roberta made! You'll see me in it a few times, too :) It inspires me to try again...and again... Thanks, Roberta!
Hope runs deep for a world without lupus.
So... while I'm recovering from these treatments, I'll have lots of time to pray, and I'd love to pray for you. Just shoot me a facebook message, or comment below and I'll remember you in prayer.
And...tomorrow morning while I'm getting my rituxan infusion...I'll be searching online and signing up for my comeback race.
Pucker up and kiss it, lupus!
Gemma says, "Bad blood cells...be gone!"
Click the link for a video of the band performing this live.
DON'T MISS IT!
It was a beautiful day, the sun beat down
I had the radio on, I was drivin'
Trees flew by, me and Del were singin' little Runaway
I was flyin'
Yeah runnin' down a dream
That never would come to me
Workin' on a mystery, goin' wherever it leads
Runnin' down a dream
I felt so good like anything was possible
I hit cruise control and rubbed my eyes
The last three days the rain was un-stoppable
It was always cold, no sunshine
I rolled on as the sky grew dark
I put the pedal down to make some time
There's something good waitin' down this road
I'm pickin' up whatever's mine
2 Samuel 18:23
"...But come what may, I want to run..."
Thanks for joining me on the journey!
Dear God,
"May all who fear you find in me a cause for joy,
for I have put my hope in your word."
~ Psalm 119:74
Amen.
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