A Wild Shieldmaiden of the North: March 2014

Kermit says it best...

When my rheumatologist enters the exam room for every visit I've had with her, the first thing she says is, "How have you been doing since the last time I saw you?"

Well...

Kermit sums it up with one look...

I wish I could make this face...

Hello, all! In southwestern Pennsylvania,

March has come in like a lion!

Thank you...

Psalm 34:18

The LORD is close to the brokenhearted

and saves those who are crushed in spirit.

Psalm 143:5-8

I remember the days of old.

I ponder all your great works.

I think about what you have done.

I reach out for you.

I thirst for you as parched land thirsts for rain.

Come quickly, LORD, and answer me,

for my depression deepens.

Don't turn away from me, or I will die.

Let me hear of your unfailing love to me in the morning,

for I am trusting you.

Show me where to walk, for I have come to you in prayer.

Summer, Highland Falls by Billy Joel

click the link to listen to the song

"Summer, Highland Falls"

by Billy Joel

They say that these are not the best of times

But they're the only times I've ever known

And I believe there is a time for meditation

In cathedrals of our own

Now I have seen that sad surrender in my lover's eyes

And I can only stand apart and sympathize

For we are always what our situations hand us

It's either sadness or euphoria

So we'll argue and we'll compromise

And realize that nothing's ever changed

For all our mutual experience

Our separate conclusions are the same

Now we are forced to recognize our inhumanity

Our reason coexists with our insanity

But we choose between reality and madness

It's either sadness or euphoria

How thoughtlessly we dissipate our energies

Perhaps we don't fulfill each other's fantasies

And as we stand upon the ledges of our lives

With our respective similarities

It's either sadness or euphoria

"Keeping up an emotional lie is exhausting"

~ Matthew Johnstone

“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” - Carmen Ambrosio

The truth is...my spirit is weary. Yes, I know many other people struggle (basically all of us), too. I know many people live with diseases that give them an uncertain future. I know many people around the world are suffering, starving, being abused, living in loneliness, and fighting to survive. I feel compassion for them and their situations. However, what I'm feeling is real, too. It's my reality, and God cares about that. Admitting my own weariness, sadness and frustration do not make God any less powerful or present. Facing my true feelings can actually allow the Lord to work in these areas of my life, help me grow and bring glory to God as others see me working through my reality with His help.

Just to be alive is a grand thing.

So, this has been a rough winter. Near the end of January, I finally began to feel an improvement from the side effects of the Rituxan infusions. One very encouraging thing is that the rituxan appears to have lessened my joint pain considerably. That's great! It does not seem to have impacted my energy level or lessened the effects that lupus is having on my blood. My red cells, hemaglobin and hematocrit are all below normal. Lupus causes anemia for some people. My white cells and lymphocytes are still below normal, which is makes it very easy for me to get sick. Lupus also causes this. I have to be careful going into crowds, like at the grocery store or a movie theater. I've been avoiding those situations. Even attending church could be risky, but I've been going and wearing a mask. People with lupus talk about feeling isolated, and this is one reason why--we are trying to avoid germs, which generally means we have to avoid people. I know some folks at church don't understand why I don't "mingle" after services. I don't hug or shake hands very often. Sometimes I just sit in the front pew until my hubby (who is the pastor) stands at the door of the church and shakes everyone's hand as they leave. I know I make some folks at the grocery store nervous when I wear my surgical mask while shopping. They are probably afraid I might give them something...it's the other way around. I refuse to live in fear, but I can't be stupid, either. Precautions are necessary. But, even with precautions, I still get sick.

In January, I had a sinus infection that just wouldn't quit. I took a Z pack and two courses of levaquin before feeling better. I also had a lupus flare and developed pleurisy, which is really painful.

Information about pleurisy

click the link above for information

This brought about the need for a high dose steroid injection, which helped. Some of my lupus friends and I call steroids "the devil's candy" because they are helpful, but come with side effects and consequences which can be just as serious as lupus issues.

After dealing with unexplained low blood sugar, I've seen an endocrinologist and been diagnosed with hypoglycemia and hyperinsulinemia. I don't have diabetes, which for many is a consequence of steroid use, but the hypoglycemia is exacerbated by steroids. My pancreas is producing too much insulin (waaaaaaaay too much), and this is causing my blood sugar to drop quickly to dangerous levels. I'm now taking the drug metformin (or glucophage) to help with the insulin resistance. I've been taking it for about two weeks now, and even though I was not jazzed about adding another medication, I do think it is helping regulate the insulin production/usage.

In mid-February, I saw my retinal specialist for some tests to determine if additional damage had occurred to my retinas. The good news is that the retinas look just about the same as my last appointment. Praise the Lord! The bad news is...during one of the tests, I received an injection of fluorescein dye into a vein. This enabled detailed photographs to be taken of my eyes. A couple of hours later, I had an allergic reaction to the dye. Hives, rash, flushing, itching, nausea, tachycardia... That necessitated a trip to the emergency room, resulting in MORE high dose steroids...

I should have known I was in trouble when this song came on while I was in the eye doctor's waiting room...(seriously)

Blinded by the Light

click on the link to hear the song

I had the eye tests on the same day that I had blood work requiring an 18 hour fast and 17 tubes of blood...

Sporting the movie star glasses after my eyes were dilated.

First attempt (failed) at IV insertion for fluorescein dye.

Second attempt (failed) at IV insertion for fluorescein dye.

The yellow/orange areas are where a small amount of the dye got into my skin after the vein blew out. My urine was this same fluorescent color for a couple of days!

The allergic reaction triggered another lupus flare...which led to MORE high dose steroids...

Facial rash during flare

FLARE FACE

What does a lupus flare entail? It's different for every case of lupus. For each individual, every flare can also be different, but there are usually some signs that each lupus warrior can recognize. In my case, fatigue worsens very quickly. This is the "I can't get out of bed" fatigue, which is different than the "everything is a fight" fatigue that I feel on a daily basis. I run a fever (this time it was 100.5; my normal average temp is 97.) I break out in a rash on my face (this time on my ears, too) and sometimes my chest and shoulders. I lost 5 pounds in a week. Every joint was screaming with each movement. (This was a huge tip off that I was flaring as my joint pain had been doing so much better after rituxan.) I developed tachycardia and chest pain with some shortness of breath. This usually means costochondritis, an inflammation of the of the ribs and sternum, for me. Thankfully, it wasn't pleurisy again. And, Raynaud's intensified rather suddenly. I've been having trouble with my feet and hands a lot this winter, but this was much worse.

These are my feet. The second and third toe are blue almost all the time lately. Because this photo is not very bright, I'll include these other photos (not my own hand or feet) to better illustrate what I've been experiencing with Raynaud's:

After getting the high dose steroid injection, I was feeling somewhat improved in a couple of days. I'm still not back to "normal," but I'm hoping the improvement continues.

Sleepless Night by Fernando Ortega
click the link to listen to the song

Sleepless Night by Fernando Ortega and Elaine Rubenstein

Another sleepless night
I'm turning in my bed
Long before the red sun rises

In these early hours
I'm falling again
Into the river of my worries

When the river runs away
I find a shelter in your name

Jesus, only light on the shore
Only hope in the storm
Jesus, let me fly to Your side
There I would hide, Jesus

Hear my anxious prayer
The beating of my heart
The pulse and the measure of my unbelief

Speak Your words to me
Before I come apart
Help me believe in what I cannot see

Before the river runs away
I will call upon your name

Jesus, only light on the shore
Only hope in the storm
Jesus, let me fly to Your side
There I would hide, Jesus

Jesus, only light on the shore
Only hope in the storm
Jesus, let me fly to Your side
There I would hide

Jesus, only light on the shore
Only hope in the storm
Jesus, let me fly to Your side
There I would hide, Jesus

Our kitty, Fflewddur Fflam had one horrible night filled with many asthma attacks in late February. Thankfully he made it through until the vet opened the next morning. I only had oral steroids to give him at home. However, we now have a spacer so that Fflewddur can use an albuterol inhaler in emergencies.
I hope we never need to use it.

Napping with me

Having a cold beverage

What the spacer/inhaler look like

(sorry, not sure who this kitty and vet are)

Since I talk about Fflewddur a lot, here are my other "kids:"

Our other kitty, Gemma

Our dog, Captain Jack

Running update...

well...

this won't take long...

I DID actually get to run once in January. When I say run, I mean jog...very slowly...with walking breaks in between...

Ben and I were blessed to be away over my birthday in January. There was a facility with an indoor track near where we stayed. They also had an indoor playing surface, and I ran on there one morning. So, that stuff you see in the picture of my shoe...that's AstroTurf! :)

I'm still signed up for races in May and September. I still believe things will work out. I still believe I'll be running soon. I think the anemia, more than anything else, is holding me back now. Hopefully that will improve. If it continues to worsen, I'll get a blood transfusion in the near future. Either way, the desired end would be MORE ENERGY.

My medal rack/inspiration station!

What do runners who are unable to run do
to stave off depression?
BUY NEW SHOES!

I'm still having trouble with daily headaches (or eye aches, really) and cognitive difficulties, although not on the debilitating scale of summer 2012. I am trying some chiropractic treatments to help with the headaches. I also have an appointment with a headache specialist named...
Dr. Kanieckie...

wonder if he looks like this:

oh, no wonder that cup of tea was in the medicine cabinet...

"There is a girl in New York City who calls

herself the human trampoline. Sometimes when

I'm falling, flying or tumbling in turmoil,

I say, 'Whoa, so this is what she means.'

She means we are bouncing into Graceland..."

~ Paul Simon

I'm really looking forward to hearing Paul Simon and Sting together in concert later this month! And, I'm thankful for the blessing of hearing Billy Joel play live in February!