Embracing life with chronic pain and illnesses.

Posts tagged ‘spastic sphincter’

Living with Chronic Pain Conditions

Words cannot explain the feeling of pain throughout the body…day and night. No positions help relieve.

Hard to express the feelings of dealing with this every day…minute…hour…month…year. It is all consuming!

I praise God for strength that is given to make it through the day. I focus on my family…wonderful Hubby, son and step son!

It is so unreal! Why so much pain and suffering? Yet you Our Lord went through so much more!

I praise God for each day and enjoy every moment with everyone!

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My “New” Self

Battling chronic pain conditions like Fibromyalgia, Polyarthralgia, IBS, Pelvic Floor Syndrome, Sciatica, recurring Shingles, Sacroiliac Joint Disfunction, arthritis throughout the lumbar spine area, permanent Colostomy…the list goes on…is VERY difficult.

It tests every ounce of courage, forces us to dig deeper into ourselves. Faith, family and friends are our positive partners. However we can find ourselves alone, divorced and raising our child/children on disability income.

There are times to cry and we must give ourselves permission for that. The emotional, physical and mental control can really take its toll.

We must be patient with ourselves and our new reality. The acceptance of changed bodies due to surgery or surgeries and getting older. When I first had my Colostomy there was no mention of using support belts to prevent hernia, so it was very discouraging to go through a peristomal hernia and its necessary repair. And now the need to layer up with specialized support belt or active support garments is just “a part of life”….essential to my well being.

Let’s face it ladies, we are not sure how to take that big 50! We’ve seen images of older women with their boobs to their bellies. I saw this happen to myself at 51!! It was like they had lowered themselves at least two inches! Ahh!!! Scary!! So I treated myself to some active wear sports bras. Feel better and parts stay where they should without that nasty pulling of a regular bra.

It takes time to adjust to our new living conditions…a new house, change of routine, reviewing and re-examining our budgets. There is time to do this…when our minds are alert and focused.

Thankful for the medical team who have continued to try new out of the box thoughts on my behalf. These have made life easier. Yet reinforce, I am no longer that same person. I have adapted, grown in Faith, now better understand my body and its cycles, know when to ask for help, and embrace every minute of every day.

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Nightly Prayer

I can feel your presence

After praying or struggling with thoughts

That peace that surrounds like a warm blanket

Calming and allowing for some sleep.

Images will come to mind

Flashes from moments in the past

Pictures from life on canvas

Reassurance of the path now treading.

Realizing that this experience will help others

Praying for the lives that will be touched

A quiet peace prevails during turmoil

I just instinctively hold tight to my rock.

We have our thoughts about our path

The direction we intend our lives to go.

Yet God often has something else in mind

So embrace His direction and be thankful.

© Stacey deSoto — 2019

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chronic pain, hidden conditions, hidden illness

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Let’s Own It

Here’s to all of you with chronic illnesses and conditions! During this latest flare (Fibromyalgia, Polyarthralgia, Piriformis Syndrome, IBS-C) plus additional infections (bacterial vaginosis and yeast infection), I looked at myself in the mirror and simply said:

“I am going to make sick look good!”

My chronic conditions have taken enough! I will embrace my “new” fragile self and continue to thank God every day for his strength and courage to allow Him to be seen through my weaknesses.

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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!

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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.

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A Fractured Root!

Yes! Went to the specialist today to find out that my molar (that had all ready been crowned and had a root canal) that has been bothering me since I ground my teeth hard and clamped down hard causing my tooth and jaw pain….followed by the swelling….is in reality a fractured root!

The dentist I saw last week had hoped that the specialist would review x-ray, perform exam and determine that he could re-do the root canal….but not so lucky!

So tomorrow I go in to have the tooth extracted…..

I am glad that this will finally be taken care of….yet I will be forced to make another decision! How to deal with the missing tooth?!?!?!

I asked the specialists some questions….and have been doing further research……will have more questions in the near future.

I am hesitant to have an implant….as I am usually the “1 – 3%” that have issues! After all……I have been in that “unique” category ALL my life…with some exceptions…..yes…in those cases….I am “completely unique”…with “no one else ever recorded” in my predicament…..

Looks like I am in for another twist! All the while my nervousness of this step is aggravating my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder and IBS!

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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.

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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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Abscess!

Well….I ended up causing an abscess when I did that wonderful grinding and clamping of teeth in my sleep about 3 weeks ago!  On Monday of this week, I awoke to a strange feeling along my right jaw line…..sure enough….a swollen nasty-looking lump.

Needless to say….a visit to the Urgent Care for antibiotics….then trip to the dentist the same day.  Dentist has referred me to a specialists since the area involved is all ready crowned and has had a root canal.

SO much fun!  (Yes….sarcasm!!)  LOL

I am really tired of this bulls-eye on my forehead!  Needless to say…the additional fighting of this infection has my energy reserves even lower than normal…..so it is possible to have an energy level that is about the ground level!  Haha

Have to try to keep the humor!  Not sure what will happen at the appointment with the specialist’s this coming Monday.  I just know that it will be exhausting…..just glad that it will be taken care of so quickly!

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