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Beauty and Tranquillity 

Pain Med…

It has been a while since I blogged….time has gotten away from me! With my body adjusting to the pain med which has taken a slight edge off (yeah!)….extreme brain fog…registering our son for 8th Grade (YIKES)….and going out of town for a long weekend….followed by the inevitable “week after”….LOL

The pain med did help with the usual increased flare that follows the time away. I found that I was more tired and dealt with much more nausea than I have in the past. My body was very heavy and tired…

I had a follow up with my pain specialist…we have established the next step! I will continue to use the pain med as a “band aid” until I can get in for a trial to see if a pain pump (Targeted Drug Delivery) will work for me.

I am anxious yet ready for this next step. The risks of the pain pump are outweighed by the benefits….the idea of not having my internals in distress (just part of the necessary side effect of the pain med) is huge since my IBS-D and overly sensitive intestinal tract are not pleased….

I am gimping along with the great suggestions from my GI Specialist and my Low FODMAP diet…it is just nice to think there could be an option that might work for me!

IBS + Fibromyalgia/Polyarthralgia +++

As we all know, we are not dealing with only ONE condition…..those of us with Fibromyalgia are dealing with any number of other conditions….

My biggest tormenter….in addition to everything else that I am and have dealt with….is IBS!  Primarily IBS-D!  (Gross as it is…it is one of the reasons I am SO thankful that I have a permanent colostomy!  It buys me time!  I do not have to rush to the restroom as fast…)

I was able to see a great nutritionist several years ago who placed me on a Low FODMAPs diet.  The food journaling….the extreme start of the strict diet….was definitely worth it!  Through the years I have been able to learn how my “gut” reacts to food….to seasonings….to additives…etc.  I have learned what to completely avoid….what I can tolerate….what is totally safe….

However, the Fibromyalgia/Polyarthralgia/Chronic Pain Disorder completely override all this careful, proven planning!  The stress that the body undergoes while dealing with our myriad of symptoms….triggers my IBS-D in such a nasty…horrific way!

No longer is it a simple notion of knowing I accidentally ingested a touch of garlic in the darn salad dressing!  It is now….”out of the blue”…..those tell-tell cramps….those gut wrenching knots….that overwhelming “sick to my stomach” feeling…..the horrific bloating….not to mention the persistent diarrhea…..followed by the absurdly tired/sore tummy muscles!!

The IBS flares require total, complete rest…..which of course makes it difficult to do the stretching I need to do for my Fibromyalgia, etc…..

Thus….the most vicious cycle!

What?? — Fibro Fog!

I had the BEST thought…something I knew would be important for others struggling with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS and the like……

Hello “Fibro Fog”!!!!  I have no idea what my “brilliant” thought was!  LOL  I am now lost….lost in the quagmire that is my mind…..as if quicksand sucks the thoughts before they solidify!

This is the everyday frustration of those of us suffering from these chronic illnesses/conditions…..

We are trapped…NOT just by our bodies and the variety of symptoms that accost us on a day to day basis……..we are also dealing with our MINDS…..our very thoughts are taken from us before we can fully understand them!

I cannot tell you how many times I will make the same statement….or ask the same question of our son!  Thankfully….he is extremely patient!  He understands that “Mom is sick!” He will just roll his eyes…..smile and make a face…..then say, “it’s okay Mom.”

No matter what I do…I cannot recall my thought…..the thought that would help others like me!  I am just left with the frustration……and am forced to just smile!  After all….this is the #1 issue that those dealing with Fibro and associated illness/conditions must realize….

We will be faced with SO many times……the many times that our minds “give out” on us!  When we are left to feel like we are “losing it!”  LOL

Take a deep breath!  You are NOT losing it!  I know….I am here….I have “lost it”!  I know that it is impossible to remember what just came to mind….that we will not be able to retain a thought….even if it is just a few steps to our notebook, iPhone, iPad, or the like….

You and I are trapped!  We are caught in a vicious cycle that our conditions have directed.  Yet…I know…somehow….this cycle will be broken!  There will come a day that I will be able to remember a thought after taking 5 steps….or after simply turning around…

I chose to believe that God has chosen me….for some strange reason….obviously He knows more than I……

He believes that I am up to this test!

Yet…I know….that only with God’s help will I make it through this!

Tooth Extraction — A Success!!

I survived the tooth extraction! LOL I was so nervous about it! It is crazy how nervous I get when it comes to going to the dentist! The fractured root actually made the extraction quite easy and fast…..the longest part was the dentist cleaning out the remaining infected gum…he also drained the “boil” (swelling along the outside of my jaw)….

My wonderful hubby filled my prescription for pain meds……and picked up yogurt and eggs so that I can enjoy soft foods for the next couple of days…..

I normally do not take pain meds….but I have learned to listen to doctor’s orders…and I will take the pain meds for the initial time period once home….

It is crazy how pain from a tooth can inflict SO much discomfort when I am all ready SO accustomed to so much pain on a daily basis.

Well….the injections are starting to wear off….and I am feeling my jaw! Sore and achy!!! LOL

Now time to sign off….to relax…use the ice packs throughout the rest of the day to help with the anticipated swelling and bruising.

The Face of Chronic Illness

Conditions such as Chronic Pain Disorder, Fibromyalgia, Polyarthralgia, IBS and other associated conditions are invisible. These conditions hurt the one that is afflicted in unbelievable ways…..the physical pain….the inability to sleep….the lost time with friends and loved ones…

I know that I am not alone in living with this hidden condition….and as is so often the case….I have a number of “hidden” conditions.

I have seen the look of “can you believe that”….or “how disgusting” when I have used an electric cart at the grocery store. I have seen those same inquisitive eyes when I am being pushed in my wheelchair by my hubby or son.

There is no outward sign….there is nothing that anyone can see with their eyes that reflect the pain coursing through my body….that constant ever present pain. The often inability to move my legs well….my awkward “Zombie walk”…..the difficult time I have in using my hands and arms….

I have had the frustration of going to specialists that do not believe in Fibromyalgia and/or Polyarthralgia. I know that others in my shoes have dealt with as well….

I am thankful for my doctors that do understand that Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, etc. are real. These conditions are not made in our imagination!

Our life with a chronic condition is like a two edged sword….on the one hand are the symptoms we live with each and every day….on the other is the way that we are “seen” by others.

How we view ourselves….the “faces” we put on for the outside world further hide our true conditions. We smile and put our best foot (LOL) forward! We do not truthfully answer “how are you today?” (I mean….who would really want to listen??? It is more than words can express!!)

Loved ones and friends can sometimes think of us as “fickle” since we cannot give a definitive Yes to an invitation….our usually answer will be “I will let you know….closer to the time”…..

The truth is we do not know how we are going to feel from day to day. No day is the same. Life is a nasty roller coaster of pain going from out of control to “manageable”…..(let me tell you though….manageable is still beyond what a “normal” person would want to deal with….even for a brief amount of time”….

Some things in life will take precedence, like the sudden death of my Sister. My conditions took a back seat….it did not matter that I could barely move….that my wheelchair was my best friend! I was present for everything….just as anyone in that position would be.

The recovery time for us is so much longer! This I am just beginning to finally grasp…it has been over 6 months since I lost my Sis…..and I feel that my body is just now settling enough to let me work through my grief….to allow me to work on some projects (like a photo album)….

I am so thankful for the strong support group that I have (my hubby, son, family and close friends)……my hope for each of us making our way through this maze of pain is to have the emotional support that we need.

Fatigue

A constant companion of chronic pain is fatigue.  It is overwhelming at times and seems to have no true relation to activity.

A perfect example is riding in a car……just that act will cause fatigue….even if it is just an enjoyable hour drive with family.  A nap is needed once home….if not…the next day will surely bring an early bedtime….as the body just decides to “unplug”!

Thankfully my husband and son are supportive!  In the beginning, I would often get the question “what made you so tired”?  Now…they understand that it accumulates (for lack of better term).

It is like walking through mud in your boots…..the more you step…the more mud that accumulates on the bottom of your boots….until you find that your steps are impaired by the weight of the mud and muck.

The fatigue that accompanies chronic pain conditions (Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, etc.) attempts to do the same!  It attempts to wear a person down….to prevent us from doing what we want to do.

The trick?  Well….there is none!  We simply have to embrace this part of our condition/illness…..just like the pain…..it is yet another companion.  All we can do is pay attention to our activities…..pace ourselves as carefully as we can…knowing that even when we are doing our best…..we can still overdo.

I try to remember that it is important I take my daily nap…..that I keep a consistent bedtime routine (try to go to bed and wake up at the same time each day)……while allowing myself to break that rule if I am too overwhelmed with fatigue…in which case….I give myself permission to crawl back into bed for a longer nap….and allow myself to go to bed early.

I know these companions are frustrating.  The true “trick” is to NOT allow these companions to rule….or to be in charge!

Hang in there!  Be patient with yourself and know you are not alone!!!

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