Embracing life with chronic pain and illnesses.

Posts tagged ‘children of sick parents’

A Son’s Worry

As I wrote in my previous blog, my Ketamine Infusion had to be rescheduled due to the change of a hospital’s scheduling.

Our son was excited about this treatment…he was hoping that I would receive some type of relief….so that his worries would be calmed…he was excited about the opportunity to go fishing with his Dad while I would be undergoing the infusion…

After his track meet, I told him that my infusion had to be changed.  That we would be traveling farther for the treatment than planned…that it would be a week from today…next Friday.  I reassured him that there would be opportunity to fish with his Dad at this new location….

He just looked at me…with worry in his eyes…”But, Mom….you have to wait a WHOLE other week”!

I did my best to smile and reassure him…yet…he can see the toll that the stress of the insurance/rescheduling…as well as the trip to his track meet have taken on me.

It tears my heart to see his worry….to hear him voice his concern….knowing that all I can do his give him hugs….to reassure him that although I do not feel good….that I do hurt….I am “okay”…

It is so stressful for our kids to see us hurting…to know that they can’t do anything….that is they can’t help fix the problem…

We can just do our best…to take time…a simple game…having them help with preparing their favorite meal…

And…trying to give them the chance to be a kid….reassuring them it is okay to be out of our sight for a while…to go and ride their bike….play with friends…

A Tranquil Thought…


As I sit in my recliner…sipping hot water…my body further overwhelmed….reacting to the stress and the joy of yesterday….

My Ketamine Infusion that was supposed to happen today was changed due to the hospital changing its infusion scheduling….the closest hospital will now only due the procedure on Monday’s….I need to have it done on a Friday….my only choice is a hospital 1 1/2 hours away…

While trying to get this change of hospitals set up….I find out “insurance won’t cover”….I then call my insurance company….I know…you can feel the anxiety…the stress!  How many times have each of us had to contact insurance…to have to fight for a needed procedure/treatment/medication….oftentimes having to enlist the assistance of our trusted Doctor(s)….

All this happening on the day of a Track Meet for our son!  I am determined to not miss one of his track meets!  So…with the stress all ready wreaking havoc on my body we are off to his Track Meet!

Just before we got out of the car….I receive another call from my pain specialist’s office. All is working itself out! I will receive a call from the scheduler for the other hospital first part of next week.  My Ketamine Infusion will now be next Friday. All will be processed through insurance…

As my body experienced spasms, burning, numbness, tingling, pins and needles…I had the wonderful distraction of watching our son participate in the long jump…the 400…and the 800…

Today….brings the flaring of my IBS…along with even more Fibro symptoms…..

At least I can close my eyes and watch images of our son…doing his best…enjoying his first Track Season!

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!

Sleep? (What’s That!)

Yes…I am poking fun at one of the very difficult challenges of having a chronic condition/illness.  The fact that sleep is so elusive!

Lying in bed last night…the pain…the stabbing, throbbing and deep aching was overwhelming and completely interrupted any thought of sleep.  I just forced myself to relax (I use that word sarcastically) as best I could.

Many prayers….quiet words whispered in my mind….even a few tears…although they do no good!  I did finally manage about 2 hours!

Thus the struggle!  On a good night, I am lucky to get 4-5 hours sleep.  Even the Benadryl trick is no longer working….it is like my body is upping the ante!  It wants to challenge me even further!  Benadryl that used to just knock me out….will not longer silence the storm that is inside of me!

I am unable to take other meds that can assist with sleep.  My internals are as unique as I am!  LOL

My fingers are still throbbing making it difficult to type. Yet, I couldn’t help but attempt to write thoughts that came upon me last night. So many of us are afflicted with sleep deprivation!

Chronic illness/conditions brings so many challenges.  Each day we are faced with a body that is out of control…not knowing what symptoms will be rearing their head.

I sit now in my recliner under my blanket….my thoughts go out to all suffering with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc. All of us that have been “graced” with these chronic hidden illnesses/conditions.

Further Insight

I gained further insight this morning! A breakthrough for me. I am finally realizing that I am struggling with being unproductive!

Before my chronic conditions forced my departure from the workforce, I was the primary income for our family.  My husband’s attempts to find employment were met with odd jobs here and there while trying to grow his fish taxidermist business.

I was working full-time, teaching 4/5 grade at our Parish, and assisting with the Altar Servers.  All of which I gradually had to let go…until I just had to disappear from them all!  I could not even attend Mass!  Sitting quietly would increase my pain level so much that I would have to lie on the couch the rest of the day!

We have moved which has helped the stress. Our son is thriving in his new school.  My husband has job opportunities.  My health has not yet improved. I know that my conditions are extreme at this point in time. I realize it will take years for my body to settle enough that I can form what will be my new life pattern.

I now understand that I had mentally come to terms with this, yet I had not done so emotionally!  Just as I am still grasping the reality of life without my Baby Sis!

This emotional toll is what I am feeling now….it is as if I am now comfortable enough in our new place to allow my guard down. Enough that my emotions are attempting to show their head.

This places me into an internal struggle! My “inner self” is now trying to protect me. This is the reason that my sleep has been so negatively impacted these past 4 days!

Once I realized what was happening, I paused to thank my “inner self” for the protection. And reminded myself of the wonderful, safe place we are in now. The positive impact it is having on us all!

Now I must attend to those feelings of negativity! That of feeling unproductive, of feeling useless. Writing this is all ready helping! It is lifting the heavy weight that I had felt.

I know that this is temporary….even if it lasts a period of time….say 2 – 3 years. I am doing all I can in the mean time….as I Blog, share my feelings, sit with my son as he does his homework, text/email those close to us, place calls when I feel well enough, say prayers (many times) daily….remind our son of his Faith of the Church and the wonderful meaning of Mass.

I will be able to attend Mass in the future….I will be able to offer some form of service….for now though….I understand that I must allow myself to recover as best I can.

For now I must embrace the emotional side of my chronic conditions!  Just as I am embracing the emotional side of life with my Sister’s physical absence.

Fibro “Flare”

Living with Fibromyalgia/Polyarthralgia/Chronic Pain Disorder has been the hardest adjustment of all my medical challenges!

There is no surgery…no pill…no supplement…no diet…no magic cure for these conditions!

There is so little research…so little know about Fibro!  The best thing I have found are the web resources….the sites and blogs of those dealing with Fibro and its assorted “siblings”!

It is a comfort knowing that I am not alone…it is sad that it takes SO long for us to be firmly diagnosed….and even then…we are usually dealing with so many other issues in addition to Fibro….each of which feed off the other.

I am not well enough to work….not well enough to be the smallest fraction of the person I was years ago before this mess!  I know that I have a long road…several years before I will have symptoms dialed down enough to know what my “new” normal will be!

“Exercise” is walking from my recliner or couch to the restroom at the back of the house….on the very best of days I might venture downstairs (once)!  I have NO muscle tone left….I used to be able to run 5 – 7 miles a day!

Night and day is not even a good description of the life change I have experienced….yet…it is not only me!  My husband and son have witnessed this transformation first hand!  My family and friends have seen the change….

I do my best to project a positive image….smile when I am hurting so badly….only those with chronic conditions/illnesses or those closest to me can catch the slight grimace or the facade!

I am NOT going to give in to these conditions….I have challenged head on my many other conditions….I am thankful for my Colostomy….I am handling my IBS with diet….

Sleep continues to be a challenge…..thankful though for my Primary Doc who has helped me come up with a sleep aid!  Children’s Benadryl (or in my case a knock-off brand since I must have dye free)!

I am thankful for the move my husband and son were willing to make to give me a chance to improve! After having visited Oregon again, I am thankful that Idaho has helped with the joint pain and incredible burning! (Now I only experience them under extreme stress or when we visit Oregon!)

There are days that are MUCH more challenging then others….yet…I am learning to just allow my self to recline…to rest….to be relieved of all duties….to recognize the overwhelming pain and sensations and not fight!  To allow myself to just stop….to rest….to distract myself from the pain…the burning….the overwhelming sensations by blogging….reading…or watching something on TV…..

Take Time

“Take Time”…..a thought….so very important to those of us with chronic illness/conditions…..a concept that others do not truly understand….

Those of us living with chronic illness/conditions….are used to “doing”….we take care of those around us….our “past” selves…pushed and did the job of 4-5 people…..we did not understand the idea of “slowing down”…or “taking time” for ourselves….

It was a thought that bothered us….it meant some form of weakness…it would be like we were saying we were weak….

I might be speaking only for myself….am I???

I refuse to believe that I am alone…that I am the only one that has been forced to re-evaluate….to refocus myself….to embrace my new “normal”!!

The hardest step is just as the title says….to “take time”! This meant to step back…to understand that it IS important for us to give time for ourselves…that it is NOT being selfish…that in taking care of ourselves….we are allowing ourselves to participate in life with those around us!

This may not make sense to someone on the “outside”….someone who is not dealing with the complete “take-over” of one’s body by an outside force…..

Just remember….those of us with chronic illness/conditions did not ask for this…..we did nothing to deserve this…..

It has just been dealt to us! So it is up to us to make the most of it! To be as positive as we can be….and to make the huge sacrifice! To learn how to “take time” for ourselves!!!!

This can mean allowing our spouse to do the dishes….giving ourself permission to get that haircut/color we have been dreaming of…..maybe buying more comfortable clothes……or just taking a nap and not feeling guilty!

Please….”take time” to find out what is best for you! What will allow you…to “take time” that will ultimately give you the feeling of empowerment!?!?!

Laying Low

I have made a huge effort today to just relax.  I have taken two naps…..been relaxing in my chair under a soft blanket.  Enjoying the view outside the front window….complete with a light coat of snow on the mountain.

It is SO hard to just relax….to allow oneself the time that the body so desperately needs!  The mind races to all those things that could be done……

Yes….you read that right…..”could” be done!  Notice?  I have shifted my mindset (HUGE step)!!!

For those of us living with chronic pain and/or illness…..this shift of mindset might seem subtle…yet it IS not…it is HUGE step in our embracing of our condition.  We are not giving in….we are not surrendering to the pain and/or illness.  We are actually empowering ourselves by taking better control of our time.

Before Fibromyalgia/Polyarthralgia/Chronic Pain Disorder, I would continue to push myself (even though I was dealing with the horrific pain from my spastic sphincter and spastic colon).  I would force myself to keep putting one foot in front of another…..keep at it until I could not move and would lie in bed unable to sleep.

Now I know there is no way to “push” through…..there is only “embrace”….”accept” my body and situation that I have been dealt.  The more I try to do…the worse my body is…..the more intense my symptoms become……

So now I understand the difference…….those things that “should” be done (like taking a shower or preparing a meal — when energy allows)….vs. those things that “could” be done (like the photo album I want to put together of my Sis and I when I visited her in Baltimore)……

The “could” will be accomplished!  As I can…..I will apply energy to get them done…..I am not pressured to meet any type of time table.  If all I can do is think of this project, I smile and know that is progress!  After all, I remembered that I have this in the drawer and that I want to get it done!

The gift to myself is that I am not pressuring myself to get it done.  In that, I know that I will complete this task….even if it is six months from now.  No stress….no frustration……

Just the understanding that I cannot address my day to day like those around me.  I must dictate my every moment by how my body is feeling…..to allow my ability (or inability) to walk (or rather attempt to walk)….to conserve my energy for those most important part of the day (when my son gets home)….so that I can sit with him as he does his homework.

To not look back on the day…..thinking….man…I “did nothing”….to saying “I gave my body the time it needed”…..

Do not feel bad….do not feel that you have had to “give up” something…..if you had to relax due to your condition.  Being gentle to yourself….listening to your body’s needs….is a BIG step!

Loss and Chronic Pain

Dealing with chronic pain is difficult…..dealing with the loss of someone so close is hard…..

It is hard to find words to describe the quagmire that I am in now. I I have pushed through….and been living with chronic illness and chronic pain for so long!

My Sis, Carrie, was such a huge support! She was always there for me! She was always my rock!

My chronic pain disorder, polyarthralgia and fibromyalgia are still providing huge challenges….as previously stated….no one I have seen yet can offer any true options……

I do not expect answers…..I have had TOO many situations in which I have been the “unique”….the “one in a million” case….or as my Sis would say…..”you are SO special”!!!!

I just hope to have some semblance of “normalcy” or control….just enough to have the opportunity to walk with my husband and son…..

I do NOT expect to be able to run again (although I am not willing to give up that dream)!

Yet…I am wrestling with the pain…the gut wrenching loss of no long having my Baby Sis……being the one that was supposed to always be there and protect her…..

The twisted paths we weave! My Sis was enjoying the best part of her life! She was happy and making a difference! She touched MORE lives than most! Of that I am SO proud!!!

I guess I am just trying to say…that LIFE is HARD! God opens doors…and provides paths for us to walk…..it is then up to us to go through those doors and to walk…..to persevere….to NOT lose our faith! It is our unique challenge to move forward….to keep taking one step after another….

Living with Grief and Chronic Pain

IMG_4342 This is the beautiful view above Inkom, ID! I

I would SO love to take my sister for a ride in my RAZR to show her this awesome area!  I want to share this with her IN PERSON!  Yet…that is NOT possible!

I know that she is seeing all of this…through my eyes….and as she is watching from above…..

Yet….IT is NOT the same….it is not the same as having her physically present…sitting next to me….laughing and enjoying all the beauty around!

I am just SO thankful to have this opportunity with my husband and son!  I have tools (like my RAZR) that allow me to go out and about with them!  It is the closest to “normal” that I can have right now!  It is my way to get out into the mountains and to share such wonderful moments!  The opportunity to watch mule deer….to watch moose….to see other wildlife prints in the snow….

It is that wonderful opportunity to lose oneself in what is going on around!  That chance to forget about the pain coursing throughout the body……to forget that all doctors and specialists have no answers…..that sharing time and giving of what energy I have to my husband and son….

THAT is what is so important!!!!

In dealing with….working through the death of someone SO special….SO priceless…..my dear, Baby Sis!!!!  I have been dealing with my chronic pain for SO much longer!  My Sis offered SO much strength to me over the years as I have dealt with health issue after issue after issue……

My Sis is not here physically to speak to….to interact with….to hug……

She does hear when I speak to her…and I know that she is watching to see how I deal with this latest health challenge.  I am on the path she wanted….we have relocated, and I am focusing on my health.

I have again stumped the medical community….specialists have told me that I am “beyond their scope of expertise”……no one has answers…….

I now await my opportunity to go to the University of Utah…..there I hope to provide a challenge that will provide answers or assistance to others!!!!  These obstacles that have been thrown in my direction are for a reason!  I know that my Sis would want me to continue to make the most of it and to try to help others!  To prevent someone else from going through all that  have experienced.

It is difficult to express how hard it is to deal with the intense, chronic pain issues I live with day to day….let alone….deal with the time that I need to grieve….to work through the loss of my Baby Sis.

All the while, I am trying to be the best wife and mother possible.

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