Embracing life with chronic pain and illnesses.

Posts tagged ‘children of sick parents’

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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Hope

It feels like an eternity since I have written a health update!

Again, I must express my gratitude for my pain pump!  It is the reason that my Pain Specialist has been able to determine that I have Sciatica (both left and right side)…. Sacroiliac (right side)…and now Piriformis Syndrome.

A week from Monday, I will receive another injection to calm the Piriformis.  We are working towards improved function of my right leg.  I am sure many of you have dealt with the Sciatic nerve(s) acting up: burning, numbness, tingling, throbbing, stabbing, muscle spasms, etc.  My right leg from buttock to the tip of my big toe has been experiencing these symptoms along with being unresponsive at times –foot will drag or leg will not move when I tell it to.

The issues with my right leg have been a big problem for years now.  I had come to accept this as just one more thing to learn to live with…yet now more layers to my medical conditions have been uncovered.  There should actually be improvement to movement!

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chronic pain, hidden conditions, hidden illness

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Another Tangent

As if our body’s aren’t under enough stress with our hidden illnesses and conditions, there always seems that more gets added to our plate!

I have been absent in dealing with “new” pain affecting my lower back and both legs. Results of the MRI showed Herniated discs (L4 and L5, S1 and S2) and arthritis in same area. So yes, definitely Sciatica.

I will go in for steroid injections next Wednesday. I do hope they provide relief. It would be SO nice to go back to my “usual” pain!

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chronic pain, hidden conditions, hidden illness

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Tummy Trouble

It is amazing how far I have traveled on this path of chronic pain and illness.  The pain pump has been a major milestone!  It has given me the ability to determine where my pain and discomfort is coming from…rather than the symptoms just shouting over each other to be heard.

Almost two weeks ago, I was able to explain to my GI Specialist my abdominal issues with specific symptoms! With my complicated history which includes Pelvic Floor Syndrome, rectal prolapse, spastic colon, permanent colostomy (sigmoid colon and rectum removed), and IBS, it provided the glimpse that he needed to best determine the next step.  I will be undergoing a Gastric Emptying Scan next week to determine if my stomach is working properly…must determine just how much of my GI tract is involved.

I am anxious to find out if the malfunctions of my lower GI tract are “isolated” or if my upper GI tract is also involved.  Another crucial piece of my medical conditions will be better understood!

As so many of us with chronic conditions know, it takes time to put all pieces together.  It takes so much effort and energy to get diagnoses due to whatever symptoms are screaming the loudest!  Living with Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Neuralgia, Postherpetic Neuralgia, Paresthesia along with the above referenced GI disorders make determining the origin of symptoms extremely difficult.

So many years…so many doctors…so many appointments…not to mention the tests and imaging/scans!  This path of chronic illnesses and conditions is not easy…there are no easy fixes…it forces us to rediscover ourselves while it strips us of the lives we had.

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chronic pain, hidden conditions, hidden illness

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A Sense of Humor

Struck by the irony

I couldn’t help smile

Another lesson learned

With laughter from my mouth…

I knew this flare would hit

That it was going to overwhelm

No matter the preparations

No amount of rest would change it…

This morning I was given a gift

Unexpected and of great impact

Providing a brief window

To step outside of the intolerable pain…

I had done my part

Resting as much as possible

In anticipation of riding in the rig

To enjoy some time with my hubby and son…

There is truly no way to prepare

My body is its own prison

Yet it will not prevent me

From holding tight to opportunities with repercussion…

This path of chronic conditions/illnesses and pain

Is fraught with boulders, sheer cliffs, downed trees and more

Obstacles unimagined from the mind of health

It becomes the ultimate learning tool…

With overwhelming pain

Stabbing, searing, burning and tearing

Stomach cramping, blurry vision and headache

Lying down and praying for relief…

This flare will ease in time

Symptoms will once again manifest

In a more “orderly” fashion

Depending upon the combination of conditions…

I had gone to bed early

Anything touching my skin

Exacerbating my pain level

Simple prayer to beg for rest…

I knew I would be home bound

Legs heavy with slow methodical gait

Symptoms scream at the top of their lungs

A brief thought of riding in the rig…

Images immediately flash in my mind

Like viewing a video

I see myself saying a simple prayer

I am reminded of my promise to rest…

Caught and called out

I laugh and nod my head

Again amazed by an awesome God

Who shared some humor with me…

 

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chronic pain, hidden conditions, hidden illness

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Living with Hidden Conditions

The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us.  I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…

LivingwithHiddenIllness

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chronic pain, hidden conditions, hidden illness

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3 1/2 Weeks Post Op

It is now 3 1/2 weeks post pain pump surgery! I have been amazed at how fast my body is healing. I have also been amazed at how quickly the swelling in my lower tummy went away. The butterfly bandages that the pain specialist placed over my surgical areas are still in place.  I have noticed just a slight loosening of a couple of them on my tummy.  No worries…supposed to let them fall off when they get loose.

I let my body dictate my actions. Let myself sleep in as long as I need….some mornings I am awake at 5…sometimes 6…I try to get up before 7.  I am making an effort to walk about the house a couple times a day…goal of 2-3 minutes…resting for an hour afterwards. A nap in the afternoon is still a must!  I find that I am sleeping for 2-3 hours…very solid and hard sleep.

I still have to give in and go to bed between 7:30 and 8 PM…to just lie down with pillow under my legs.  I take advantage of this quiet time to read or work a puzzle.  This down time has worked well to allow me to fall off into a good hard sleep.

We have definitely set what I think is the perfect balance of the pain pump and my current oral medication levels.  When I go back in (in about 1 1/2 weeks), my doctor will again increase the pain pump level so we can continue to cut back the oral meds.

This is such an exciting time! It is SO awesome to be working toward a goal…an achievable goal!  It is SO rare for those of us with chronic pain from Fibromyalgia or the like to actually be able to be in this situation!!

Now don’t get me wrong…I fully realize the path that is forming in front of me will be a long and arduous one.  I know it will be years to regain some muscle…as all muscle is gone for having been homebound for so long. Even with this realization, my excitement is not diminished!

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Patience

As day nine post pain pump surgery begins, it strikes me that my pain specialist really did a great job in preparing me for this! I truly was ready to be homebound for the first two weeks. I was mentally ready to be patient with the process! What a thought!!

My thoughts are still muddled at times…very hard to keep on track. Yet…I can just smile and breath deeply…there is nothing that I have to do…except allow my body the time to heal….allow the scar tissue to build near the pain pump and the catheter.

I am able to step outside now…slowly and carefully with my walker. I do not venture very far…it is just a few steps to feel the touch of the sun on my skin…feel the slight breeze…see the brilliant colors! This is a treat that I enjoy once a day…in the mid morning. It is perfectly timed between rest breaks.

I am thankful that I am able to listen to my body…to sleep when I need to…to relax in my recliner (sitting in the chair…cannot put the foot rest up yet).  My chair is just high and firm enough that I can get to a standing position with my walker as support. I know that I am not yet ready to sit or lie down on the couch.

I am getting anxious for my follow up appointment…I am excited to hear the plan my pain specialist has in mind…it will be interesting to see just how easy it is to remain patient! : )

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Second Week of Withdrawal

This second week has changed up the withdrawal symptoms! My body temperature is seriously out of whack…I mean…how can I be soaking in sweat and freezing at the same time? How is that possible? The cramping, twitching, stabbing, tearing in my feet and legs is like they have a mind of their own. The oversensitivity of my chest makes it SO hard to deal with the pressure of even the most light weight shirt.

I am thankful that I have a break in the nausea! And the emotional roller coaster appears to be letting up a touch…after a horrific morning yesterday! I am still not able to really focus on anything….my lack of focus is much more than Fibro Fog.

It is strange…and I am sure that it sounds almost impossible to an “outsider”…to someone who is not living with chronic health conditions….that we CAN tell the difference.  We can discern the symptoms that are caused by our conditions from those that are caused by the withdrawal…even though they are heaped on top of each other…jumbled together.  It can be hard to verbalize…to describe…

During this second week, I have been attempting to do more research…more review of Cymbalta. It is amazing to me at the lack of true testing…true review of what this drug actually does to our body! And seeing repeatedly, that the company did not conduct studies of withdrawal beyond the two week mark, is incredulous!

Our society is being brain washed into thinking that there is a magic pill or some secret cure for everything. The cold hard truth…the truth that those of us with the chronic conditions/illnesses know…is that there is NO magic pill…there is NO secret cure! We DO hope that more research will be done…that some day there will be better understanding, a better treatment.

We must work diligently with our medical teams…make the tough decisions with them and our families as we determine which treatments are the best for us. Each of us is unique…there is no “one size fits all”.

Now to continue my fight…to get through this withdrawal period…however long it will take…

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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!

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