Posted in Anemia, Thoughts

Finally Some Relief

Finally after years of trying to get a doctor to send me to the hematologist and an unexpected extra week of waiting, I was able to get my iron infusion. I was supposed to get my infusion last week, but the day before my appointment I got a call from the doctor’s office saying that there would be a delay in my appointment. When I asked why, I was told that they did not know, but maybe they overbooked.

I must admit that I took the news rather hard. I was feeling horrible. I was starting to feel very close to the way I did when my iron stores dropped down to less than 3. I had reached the point where even the slightest activity, such as taking a shower or getting my supper left me winded, and I was so worn out that I could barely lift my head off of my pillow. I knew that I had reached the point where getting the infusion was a must, and now I was going to have to wait another week, with my iron dropping, to get some relief. My heart fell and my eyes began to water. I must admit, that if it were not for the fact that I was sitting outside of Happy’s vet, I would have been cried, because in that moment I really questioned if I would ever get the infusion.

Every day for this past week, I would wonder if the phone was going to ring and I would be told, sorry, we have to reschedule again. Every time the phone rang I was afraid that it was them. Even Thursday morning, I was so concerned that my appointment had been canceled that I called to make sure that it had not been changed. It was not until the IV needle was in my arm that I finally allowed myself to believe that I was finally going to get some relief.

And did I ever need the infusion. Since it was my first infusion at that office, the doctor had to see me before I could get the infusion. And I found out why I was starting to feel like the time my iron stores had dropped to less than 3, my stores were getting very close to that level as they had dropped to a dismal 4. With an iron saturation of 4 and a hemoglobin of 10.1 and dropping, no wonder I could barely lift my head off my pillow.

Already I can feel some difference in my energy levels. While my energy is still low, if it were not for the miserable side effects of getting an iron infusion such as terrible muscle cramps and pain and headaches, I would probably be able to do 5 times the amount of work in a day than I have done for the last two or three months. Granted that is barely anything in comparison to a normal person, but at this point it certainly feels like a major achievement.

But while I am very thankful for the relief of that this infusion has brought me, I have a new concern. At the doctors office was told why my appointment was canceled, and the reason is very concerning. It turns out that my appointment was not cancelled due to insurance or overbooking, but a far more serious reason. Short supplies.

Yes, to the list of items that are in short supply you can add iron. And like baby food, getting an iron infusion can be the difference between life and death. Right now the supply is so low that they are having to reschedule patients and where they would give them one infusion every week for several weeks, they are having to put a week in between.

While getting my infusion I heard the nurse tell another patient that the doctor had wanted to give her a certain type of iron, but had to change it to another because the supply of that type of iron was too low. It was so low that they had only been able to get 20 bags and they had used 12 of them so far today. No wonder they had to reschedule my appointment. Leaving me with a new concern, that as the cost of gasoline rises, and the supply chain becomes more precarious, how long will it be before the iron infusion that I and so many others need to keep us alive, will become a causality of this volatile market and disappear.

Posted in Acrostic Poetry, Anemia, Poems Begining with A, Poetry, Thoughts

A Few More Days

Good news, hopefully anemia will not be controlling my day much longer! I am scheduled to get my first infusion this Thursday. Which is great, because even with the occasional iron pill and daily drinking of the prune, Rasin, grape, and date drink, my hemoglobin is quickly dropping, and it is becoming harder to do even simple task like eating without becoming short of breath. My iron is getting so low that even though I am spending a few minutes in the sun nearly every day to get some natural vitamin D, I am becoming as pale as a ghost.

I am still not a fan of spending most of my day hooked up to an IV, but at this point it is an answer to prayer. It will be so nice to be able to do simple things like stand up and walk down the hallway or get something out of the microwave without becoming winded. While there are many big things, I want to do like complete 5 minutes of exercise on my total gym without gasping for breath or spending ten or fifteen minutes a day completing my next poetry or story book, it is the simple things of life that I am looking forward to.

I am so tired of feeling like a wilted tree that has no power to fulfill its regal calling and proudly lift its branches toward heaven.

Each time my iron drops so low, I am reminded how easily we forget the many little gifts that God has granted us. The ability to eat without feeling like you are going to suffocate, to bend down without fearing that your breath will be completely taken away, or comfortably walk a few feet without hyperventilating are all too often taken for granted. Too often we spend our lives chasing the big gifts, and think ourselves ill-used and believe that our prayers have been ignored because we do not receive the big bonus that we deserved, the funds to take our dream vacation, get a promotion, or some other desire of our heart.

Continue reading “A Few More Days”
Posted in Acrostic Poetry, Anemia, life, Medical, Poems Begining with A, Poetry, Thoughts, Uncategorized

Anemia: One Step Closer to an Infusion

Hurray, after more than a month since I got my lab results back showing that my iron saturation had dropped to a 4 (the low end of normal is 15), I finally have an appointment with the hematologist. I wish that I could say that I was looking forward to getting an iron infusion. But while I appreciate the temporary increase in physical and mental energy an iron infusion brings, I am not a fan of having to spend 6-8 hours getting an infusion, and the uncertainty of how I will react. To make matters more difficult, this will be the first time that I have to get an infusion without the companionship and protecting watch of my father.

But even though I do not like getting an iron infusion, my stomach cannot tolerate taking iron pills for more than a few days at a time. After a few days it makes my chronic nausea so strong that I dread meal time to the point that I at times I am delaying and even skipping meals. To alleviate the nausea I have to stop taking the nausea causing my iron levels to sea saw up and down, and slowly causing my iron stores and iron saturation to drop to a point that I can barely lift my head off the sofa and where some days even a few steps leaves me gasping for air.

Fortunately, while I have been waiting for my referral to reach the the hematologist, I found a couple of natural ways to help me get enough iron to help me do one or two task and breath a bit more comfortably. One natural remedy is to drink a bit of beet juice mixed with another juice like grape or apple juice. Mixing it with another juice is important as on its own, probably due in part to its strong flavor, it can be hard to keep down. But mixed and diluted by another juice like apple or grape it become more tolerable.

Continue reading “Anemia: One Step Closer to an Infusion”
Posted in Anemia, life, Medical, Poems Begining with S, Poetry, Thoughts, Uncategorized

Sleepy head

Sleepy head is a fun little poem that was originally inspired by my dog Happy on a rare day that he preferred sleeping in to getting up and having an adventure. But since my iron stores and saturation have dropped to near lows, it could easily have been written about me. It does not matter if I get a good night sleep, or I toss and turn most of the night away, the thought of getting up in the morning fills me with dread.

I have a million things that I want to do, so the dreaming and planning portion of my brain is excited by the day, but the rest of me is too tired and achy to respond. No matter how good a nights rest I get, I wake up feeling as if I spent the whole night marching in my sleep. The only way to survive the day is by taking a few dozen cat naps and one or two long naps.

Part of that is because the lower my iron saturation gets, the harder it is to catch my breath, turning everything from the mildest workout to the simplest stretching or bending task into a major workout. Without enough iron, my body is struggling to get the oxygen where it needs to be, increasing recuperation time and massively decreasing my already limited energy levels.

Hopefully it will not be too much longer before I can see the hematologist and get a much needed iron infusion. Until then I guess I will just have to be a sleepy head with a greater appreciation not only for its important role in helping you to enjoy a vibrant and energetic day.

Posted in Acrostic Poetry, Anemia, life, Medical, Poems Begining with A, Poetry

Anemia Again

It was a less then delightful way to spend a birthday, more than 3 hours in the doctor’s office. But it was a necessary misery as it turns out, and not unexpectedly at least to me, that my iron stores are low and my iron saturation at 4 percent is very low.

Even though my hemoglobin was normal on my last visit, I knew that my stores were getting seriously low. Thanks to the serious bouts of nausea and my allergies to food dyes, it is nearly impossible to keep my iron in check. The low dose of over the counter gentle iron helps to keep my energy up a bit. But all it takes is a few days off to try and settle my stomach for my iron levels to come crashing down. Lately it is only a matter of a few days without iron pills before I become as pale as a ghost, find it hard to lift my head off the sofa arm, I struggle to catch my breath, I start forgetting even the simplest of words, and my limbs become ice cold.

So like it or not, it looks like this anemia inspired acrostics is the perfect poem of the day. While I hate having to spend an entire day stuck in the infusion center, it looks like getting a referral to the hematologist and enduring 6 to 8 hours for an iron infusion is back to being a necessary evil.

Posted in Anemia, life, Medical, Poems Beginning with T, Poetry, Uncategorized

Tired, Tired, I Feel so Tired

Tired, Tired, I Feel so Tired is a poem that I wrote during one of the flare ups of my chronic anemia in an attempt to express the deep fatigue that was robbing me of the freedom to live life to the fullest.

KB Writes

Tired, Tired, I Feel so Tired

By Katherine B. Parilli

Tired so tired!

My body feels so tired.

Like a weary shorn out rag I walk around in a worn out daze.

My hallow body feels ancient and weighted down from some unseen place deep within;

As if an indivisible foe is sucking the energy from deep within.

th44FQCKDX The tiredness is so deep at times that I feel like a toy that someone removed the battery from.

 

I struggle to stay focused.

I desperately push on,

But my endurance is gone.

Even my hunger is diminished,

As my empty stomach trembles at the wearisome draining thought of food.

 

Oh who would believe that an invisible bug could cut a grown being down so completely?

Could bring them crawling to their knees.

That a microscopic organism could invade a body composed of billions of cells,

And bring it halting…

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Posted in Anemia, Poems Beginning with T, Poetry, Uncategorized

Tired, Tired, I Feel so Tired

I thought that since my iron deficiency anemia has once again raised its ugly head, draining my energy, causing my heart to race, and leaving me in a mental fog, that I would share this little poem inspired by my battle with chronic health issues.

Tired, Tired, I Feel so Tired

Tired so tired!

My body feels so tired.

Like a weary shorn out rag I walk around in a worn out daze.

My hallow body feels ancient and weighted down from some unseen place deep within;

As if an indivisible foe is sucking the energy from deep within.

 

I struggle to stay focused.

I desperately push on,

But my endurance is gone.

Even my hunger is diminished,

As my empty stomach trembles at the wearisome

and draining thought of food.

 

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When the anemia reaches a certain point, even the need for food is tempered by the debilitating exhaustion that cripples both mind and body.

Oh who would believe that an invisible bug could cut a grown being down so completely?

Could bring them crawling to their knees.

That a microscopic organism could invade a body composed of billions of cells,

And bring it halting to the ground.

Robbing the body of its vital fluid and nutrition,

Stealing the vibrant glowing spring from its once happy free flowing step,

And freezing the elastic stretch that gives life and freedom to the body.

 

Such a miniscule molecule,

But the power to debilitate is locked so cunningly and curiously within.

The power to slow down expansion,

The power to make humanity so ill,

The power to destroy instead of uplift,

The power to devastate and destroy nations,

The power to kill both big and small.

 

What a little molecule,

What a little virus.

So small,

So insignificantly microscopic,

Yet it can hold the fate of many under its whimsical rollercoaster control.

 

So the sad story goes with sin.

It is just a miniscule microscopic sin.

It is just a wee small fraction of a dot to hold onto.

It cannot possibly kill or maim.

It is too small to do any real harm.

You cannot possibly compare it to any of the real killers like stroke and heart disease.

Mine is just a small unnoticeable little cherished blot that it cannot possibly lay down roots and smother my heart.

 

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Sin, we have grown so used to it, that its terrifying effects no longer seem to fill us with awe. But if we would only pause to think that one little act, one little deviation from right has lead to such misery, we would shiver in horror.

Why I have it so well stuffed and tamed that it cannot go anywhere.

It is so confined into that back corner that it cannot possibly reproduce and do anyone or anybody any harm.

How can you claim that one little sin such as mine is so wrong?

How can one little miniscule germ kill hundreds,

Thousands,

Even millions?

How can one virus bring one metropolis halting with heart pounding fear to its knees?

 

One little sin,

One little stain,

One little stubborn willfully cherished corner,

And some day the day may come when just like an out of control mutant toxic virus it will flourish and spread,

Overflowing and choking out the fresh healthy cells that stand between it and sunshine,

Killing off all the noble and pure desires of the heart.

Destroying your longings to live a pure and righteous life.

 

But even if that day should never come.

One sin,

One longingly cherished sin,

What is the price?

What is the cost?

At whose ultimate expense will the price be paid?

 

How many will see and walk away?

How many will see and stumble?

How many will see and follow your example?

When the day of reckoning comes will you want to turn and walk away?

Will you finally want to part company with it then?

If you have not begun the struggle now,

Will you suddenly be ready just because Jesus has shown up in the clouds of glory?

Or will you find that you have paid the ultimate price for living with and flittering with a deadly virus?

 

© 2016

Posted in Anemia, life

Vegetarian Pica

Thanks to another flare of my iron deficiency anemia I have not only been enjoying a debilitating bout of fatigue, chills, and ghost pale skin, but I have been dealing with another round of vegetarian pica. Vegetarian pica is a term that I created to explain my sudden desire for and acceptance of meat when my iron takes a rapid plunge.  Having been raised a vegetarian, I had no taste of desire for meat. Growing up the idea of consuming the dead body of a sad faced cow or chicken had no appeal to me. I much preferred my vegetarian hot dogs made of unfeeling soy than the ground up body of a once living and breathing animal.

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Posted in Anemia, life

Iron Deficiency Anemia: More than Hemaglobin

For years I suffered from rounds of debilitating fatigue that would ground my life to a halt, days of miserable headaches so strong that I could barely tolerate the intense agony of opening my eyes, at times the slightest effort would leave me winded, and with an ever increasing need for ice water. Like an endless merry-go round I would enjoy a burst of energy that with each passing round slipped away faster and remained away longer.

Month after month the need for rest grew.  Controlling more and more of time as I scheduled my whole life around the expectation that it was not a matter of if, but when the life-halting exhaustion would bring my world to a halt. Instead of attending my college courses in person I switched to only online classes that allowed me to work ahead so I could accomplish as much as I could and would allow me to get ahead if possible in my two to three working days before my body crashed for the rest of the week.

Continue reading “Iron Deficiency Anemia: More than Hemaglobin”

Posted in Anemia, life

Life is Calling and I am Stuck on the Sofa

From my spot on the sofa I can watch the first dry summer breeze as it ripples through the leaves of the oaks in my backyard.  A small family of red coated cardinals is playing tag in my neighbors yard while lazy marshmallow clouds decorate the crisp blue sky.  In the distance I can hear the sounds of kids splashing in a pool while their watching parents talk with friends from the comfort of their shady porch.

It is summer and life is calling. Calling me to get up fertilize  and weed my little backyard garden, to admire the saucer size peach and red hibiscus flowers, or to pick a pepper the size of my hand.  Life is calling my name begging me to cut and sew a cool summer blouse, to reorganize my closet, to spend an hour at the gym, to try a recipe for blueberry pie, or curl up in a corner with my favorite book.

Continue reading “Life is Calling and I am Stuck on the Sofa”