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Posts tagged ‘hidden illnesses’

Awake?!?!

The beauty of the sky

The myriad of colors

The sounds of life abound

Even with the ever ringing in the ears…

It is as if I had been in a lifetime slumber

My senses forever dulled

Reaching upwards for help

While overwhelmed in quicksand…

Illness strips us of the familiar

We are thrust into the unknown

Each step taken as with a blindfold

Hands outstretched groping in darkness…

Our medical teams struggle

Conditions and illnesses so misunderstood

Further muddled by myriad of symptoms

Each of us so different from the other…

We search for answers

Yet try as we might

We find health elusive

Stripped from us and locked away

Secreted in the darkest, farthest corner…

We are tried and tested in ways indescribable

As words are a shallow testament

To the inner symptoms that abound

Forever changing and challenging…

 

The Beacon

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The beautiful lighthouse at Newport, Oregon. Brings back such awesome memories! A weekend of baseball shared with my Sis!

The Unexpected Joy

While in town last week after my doctor appointment, my husband and son went into a family owned feed store. They happened to have this beautiful, white female boxer pup…with the most brilliant blue eyes…they kept talking about her.

When I woke up Monday morning, I felt some strength and had a bit of focus. The last two weeks of not feeling well, Fibro flares, IBS-C flares, and head cold….then finally starting my new medication dosage (which completely knocked my out)….had finally loosened their grip for a brief time.

I took advantage….and once hubby was a work and our son at school….I snuck into town…and with the help of the wonderful, courteous staff…this beautiful pup was loaded up and ready to head to her new home!

Needless to say, our son was ecstatic!  Our lab was pleased to have a little one around…and Sadie has blended right into the family.

It has been such a blessing! She has brought wonderful distraction…endless snuggles…and many laughs as she and Chrly wrestle and play.

It has truly helped increase the joy of this wondrous Christmas Season!

Merry Christmas Everyone!

Give Yourself a Break

It has been a long time…a very long time since I have given myself permission to remain in my pajamas for the day. Yet that is exactly what I did this morning!

The electric shocks continue to course through my body…my ears are ringing so loudly! Still! The oversensitivity of my chest is SO overwhelming! Words cannot express the pain that is permeating throughout my entire body…coursing through…causing waves of nausea.

Oh the joy of living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/and the like!

I am doing what is SO difficult for each of us…I am giving myself a break!  My symptoms are in control now…however, this is temporary!  It may be tomorrow…the day after…or next week…it will come though!

I will awake one day soon with the notable absence of these terrifying shocks…the incredible “out of body” feeling…the deafening, high pitched screaming in my ears…

My only focus today…is rest…do not feel obligated…enjoy the comfort of pajamas…of a warm fire on a cold day…

Decisions

Having diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-D, Pelvic Floor Syndrome and probably undiagnosed Chronic Fatigue Syndrome and Restless Leg Syndrome, pose daily conscious decisions.

I must consider what may be happening on any given day to determine if I should expend the energy to take a shower…or to simply wet my hair in order to save the energy for a ride to town with my hubby and son.

The feeling of my skin dictates what I am able to wear. After all, wearing a long sleeve shirt vs. a short sleeve with loose sweater/sweatshirt, will either further irritate my overly sensitive chest area and/or increase the stabbing and burning in my arms.

The idea of shoes that have to be tied are, for the most part, out of the question.  I must choose slip on sandals or boots. The combination of having to use my fingers to tie and the effort/energy to put on tennis shoes is too much!

There are many other decisions that we must make each and every day in order to manage our symptoms. (Believe me, I am using the word “manage” VERY loosely!)

The even harder decisions are those that we make with our health care provider(s).  Deciding what type or combinations of medications we will use to try to reign in symptoms. We also must continue to monitor how these medications are doing. We must speak up and talk with our health care provider(s) when we need to increase dosages or to let them know that something is not working for us.  We also have to discuss new symptoms and the changes in current symptoms.

With all this “thinking” we are also dealing with the brain fog that disorients us…makes remembering simple things, like brushing our teeth, to important things like taking our medication(s) a challenge on its own!

We must rely upon whatever “tool or tools” work best for each of us.  Some find sticky notes helpful, some use lists….for me, I have a great Fibro App on my phone that tracks my meds, sleep patterns, symptoms…..and I also use a Note App to jot down questions for my doctor.

I also truly appreciate the fact that my hubby does his best to schedule work around my doctor appointments. He asks the questions that I forget…he interjects and comments on his view of the medications…so helpful to me and to my health care providers.

Ketamine Infusion — 3 Weeks Later

As I had previous posted, the Ketamine Infusion had changed up my symptoms.  This afternoon we did something as a family that we rarely do….we went to the movies!  Yes went to the earliest Matinee showing…and yes…I took a nap before we went.

Sitting through a movie is not pleasant. Constantly fidgeting…shifting because of the discomfort. Then…BAM….my body came out of the little bit of a protective cover that the treatment had provided. It took all my effort and focus to not start screaming…..all I could do was shift….try to watch the movie….shift….

The burning sensations became so overwhelming…so fast…..my body is still on fire….clothing hurts (it is causing stabbing sensations into my chest)….throbbing….numbness and tingling are more intense…..no need to continue.

I will be checking in with my pain specialist this week to review where I am….to find out if he thinks another infusion will possibly provide a bit better relief….will be interesting to hear what he thinks.

For now….I must say it was wonderful having a brief period of time that allowed me to have that lower pain level….Level 10!  Now I am ramping back to what I would tell the nurse is a 20!

Spoons? What Spoons!?!?!

IMG_5138We are always hearing about “spoons”…”marbles”…”pennies”….  Whatever the imagery used, it is to represent the same meaning…..available energy.

With that said…I know that I am not the only one that just gets tired of having such a limited supply of “spoons”!!!  I am tired of the way it negatively impacts life….the additional stress that it brings to all members of the family….the restrictions and limitations….

So…I did what everyone with a chronic condition/illness should NOT due!

As written in a prior blog…I went out shooting with my husband….the next day was our son’s birthday.  We did keep things low key….my primary duties were baking his birthday brownie and making Macaroni and Cheese (from scratch….with his special cheese and soy milk)…all while my body was completely out of sync…more so than normal because of the extra activities of the day before!

The day after his birthday was the big celebration!  We purchased tickets to the National Monster Truck Competition in our area…..which included VIP Pit Passes….it was so awesome seeing the excitement and enthusiasm of our young man as he walked from truck to truck….having pictures taken with drivers and wishing them good luck in the evening’s competition!

We were able to sit in the handicapped area so I could remain in my wheelchair with my hubby and son behind me in the companion seating….even with ear plugs my senses were overwhelmed….the lighting…the sound made me very dizzy.  I was fidgety of course because of my increased symptoms….distracted by the huge trucks and our son’s enthusiasm!

I was definitely operating on a zero spoon count….and the night was much longer than we had anticipated…..

Needless to say…I was so exhausted….and that coupled with the stabbing, searing and burning pains….I was unable to rest well….only getting a couple of hours of sleep.

This morning brought what I anticipated….a body completely out of control…..truly negative spoons at my disposal!  Pain, stabbing, aching, exhaustion…..yet a smile on my face from the great time our son had last night!

Then my hubby asked about going out to shoot our 22s…..to just spend a short time outdoors….I agreed…so we all went….thus even more negative spoons added to my count!!!

Now I can barely move…..I know the intensity of the pain and other symptoms will continue well into tomorrow….and probably the next day….

Do I regret my actions?  Not at all!  The precious time spent with my hubby and son….being able to participate (even in a very limited way) in our son’s birthday weekend celebration…..will bring a smile to my face for many days to come!

I have come to realize that there are times that we just have to throw out our understanding of how many spoons we have to spend……and focus on our loved ones who desperately need some “normalcy”…..need some type of participation in their lives…..reinforcing our connections…

Believe me….this is by no means the way to live each and every day!  It is just taking the time to open myself to knowingly cause my symptoms to flare….to increase in their intensity….in order to share some special moments….memories….that will last a lifetime.

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