Embracing life with chronic pain.

Posts tagged ‘Ostomy’

Riding In a Car (YES Painful)

For those who suffer from Chronic Pain and associated conditions, the thought of riding in the car brings mixed feelings!  Like yesterday…..we had one last opportunity for our son to participate in a youth hunt.  The catch?  It would require riding in the rig more than normal…..it was an area about 1 1/2 hours away….

I could not say no.  My body was all ready hurting beyond belief….much more than normal….however, I desperately wanted our son to have one last opportunity!  (Yes….I completely ignored the screaming of my body which said to stay home!)

Needless to say….it proved the fact that riding in a vehicle SUCKS!  Truly sucks when you suffer from a Chronic Pain condition (like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, etc.)!  A healthy person does not understand how much effort….how tiring….how difficult it is to ride in a vehicle….even for a short amount of time!

Was it worth it?  Yes….our son did not get a deer…..BUT we as a family saw the most beautiful sunrise!  And, we were able to see about 60 Antelope!  AWESOME!!

Now….today….I “pay the piper”……I recline under a heated blanket…..not able to do anything…..

Yet…I can close my eyes….and see that sunrise….here our son’s excitement as he watched those antelope through the binoculars….time with my “guys”…..is priceless!!!

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Rejection

I received my rejection letter from Social Security saying that they do not think I am disabled. 

Deep breath….okay….I can barely walk from my living room to the bathroom….my entire body hurts so much….I can barely type this!  LOL  Yet….I will endure the increased pain to prove my point!!!!

There is NO way that I could hold a job!  My own doctor would allow me no more than 5 hours….of those 5 hours….there MIGHT be 2 hours of work!  Now….WHAT company would hire me to do 2 hours of work…AND pay me for 5 hours?  (Other than the Government of course!!)….LOL

I did the Bank Reconciliation for us at home today….WOW!  Their were 4 checks that I had COMPLETELY spaced!  Tell me…how would that translate into a working environment?!?!?!?!  It WOULD NOT!

My point?!??!  I am more sick than they can imagine!  Yet…because it is NOT visible….they have NO IDEA how much of a predicament I am in!  

I am LUCKY to walk across the room to the kitchen….maybe 10 steps….(this reads 2 MILES)……I must use my RAZR to reach our shop/garage which is about 1/4 mile from house…..(this reads….a minimum of 20 MILES)…..

I am currently at war with my body…..the sensations are completely overwhelming!  I have NO say in this! I am a PRISONER within my OWN body!  There is NOTHING I can do!  I just…..quietly hope that at some point….at some time…my body will settle down….will understand that I am NOT the enemy….

Stress and IBS

I am sure that I will be preaching to the choir here!

I have learned something more from my body….from the many health challenges that I have experienced…..from experiencing issues that I had to educate my physicians…..

Stress is beyond our control! It is the one element that we cannot dictate….we cannot completely control our exposure to it. We have limited input….we do our best to reduce the stress in our lives….to protect ourselves as much as possible.

The reality….what we experience at work….in life….some stress is easier to control….to deal with than others. Our bodies react more so to some situations than others.

We also have to focus on what is important! Our families….our kids….our spouses…..

We must also try to balance physical activity to promote our own individual personal health. Such a frustrating balancing act at times! Especially when we are trying to regain control! Trying to improve our physical strength/health….improve our time with our family……to just regain a sense of ourselves after dealing with so many years of struggling with serious health issues.

Personally, I have found that the stress from work is the part that I cannot control. The knots in my stomach…the pressure in my gut…is caused by the stress induced by things completely outside of my control. I can do nothing! I can only focus on the time with my hubby and son…..game nights, walking our property in search for tracks and hearing our son’s theories…these are the tools that I use to chase away the stress!

I also use physical activity….walking on the elliptical…lifting weights…..hiking the property…..although I cannot use these options as much as I’d like….I am working towards setting more time aside for me…these physical outlets will help to burn energy…to help to combat stress.

One other key stress release for my is being able to shoot bows with our son. It is such a wonderful stress relief……to breathe….focus on the target…..draw…breathe…then release. We have fun with different challenges.

We have to learn the best way to react….to respond to our body’s response to stress. I wish there was a magic cure….

Ultimately…I wish that none of us would have to deal with issues of stress for our bodies…..

Pizza Night

I had decided to pick up a pizza tonight for my husband and son (taking advantage of the $10 pizza special through Papa Murphy’s). I can order so that 1/2 does not have cheese (since our son is lactose intolerant). I just bring home and sprinkle his cheese on top of his portion (the almond cheese that he likes or Sharp Cheddar).

Tonight though, I thought I would also try a Low FODMAP pizza for me! I stopped at the market to pick up some thin sliced ham that I could use. Once home, I got their pizza in the oven, then pulled out a boxed Chebe basic bread mix. Used that bread mix as my pizza crust. Rolled it out…..made a tomato “sauce” from a basic tomato paste I can use (seasoned with basil, oregano, pepper, sea salt, and a touch of sugar)…..added the ham and pineapple….sprinkled with Sharp Cheddar cheese and baked it at 400 degrees! YUMMM!!!!!

I will change my recipe a touch…..I will bake the bread for about 10 minutes…then add the sauce and toppings……put back in the oven to melt/brown the cheese. This will make it a bit more crispy.

Overall….YEAH! So cool to enjoy pizza night with my guys!!!!!

Ostomy

While waiting in the surgery preparation room, the door was ajar.  As before any surgery, it is a bit nerve wracking….sitting with your loved one….talking…answering the questions nurses and other staff must ask….reviewing the upcoming procedure….saying your name and birthdate….over and over….just to verify that you are you.  (A necessity…I know!  I would not want to mishandled!)

I hear a man’s voice as he is passing in the walkway…..”I would never want a bag!  That would be the worst thing that could ever happen!”

First off….there is obviously worse that could happen!  For me…the thought of not being here with my husband, son, family and friends would be the worst!  It is so sad that someone has such a preconceived negative notion about “living with a bag”.

If you are an ostomate, there is no doubt that there is a transition….even if it is something planned and prepared for…..as was my situation.  I was in such horrific day-to-day pain that I was looking forward to the hope that it would help!  I took time before the surgery to educate myself.  I read all I could find on-line….signed up for OstomyLand and read all the postings possible.  I visited other websites and support groups….also read postings on various medical center websites.

I knew that I was going to go through something major…..I knew that there was a chance it could have to be permanent.  No doubt, the first surgery was complex….with the repair of my rectal prolapse, removal of uterus and the colostomy.  It was strange to wake up with something different…a bit foreign.  The Wound Care Nurse was awesome!  Her support and explanation of how to handle my new stoma was fantastic.

It did take time to gain body confidence.  There were questions from loved ones, friends….and most importantly from our son.  I approached each as an opportunity to share (as appropriate)…..obviously some individuals were given some details….others just a “doing well”.  With our son, however, we chose to be totally open with.  I wanted him to understand that what the doctor had done had improved my health….that it was a positive.

Our son, too, was curious!  He wanted to see all parts and pieces….he wanted to see the barrier….the bag.  He wanted to understand how it was attached…how it worked.  He thought it was “Cool”!

I did deal with a “set back” …..a peristomal hernia.  My husband created a wonderful hernia belt that worked well with my choice of barrier/bag system.  I did go through surgery to have it repaired……

My underlying extremely rare condition to continued to rare its ugly head…..the pain back….even more intense.  I again saw my doctors scratching their heads….their eyes full of concern…..not knowing what could be done.  My constant spastic sphincter (which now was at least 5 years going strong) was unlike anything.  I asked and asked to just have it removed.  Of course, this is VERY extreme…..and would make my ostomy permanent.

I again searched and searched…..read blog after blog…..and continued to dig and interact  with other Ostomates.  My search led me to one other individual….on a different continent who had shared his story….who had had the very surgery that was asking my doctor to do.  The surgery had helped him.  Armed with this information, I again approached my doctor.  After a long discussion, the decision was made.  I had nothing to lose and everything to gain!  So we went for it!

I awoke with no “normal for me” pain!  I was thrilled!  I healed well….my body adapted.  I am even now more thankful for my stoma!

My health issues were not over….no…as anyone reading these blogs I write will know.  However, my quality of life has improved SO much from having a colostomy……at times I wish it could have be done earlier!

The ostomy has provided such opportunity and flexibility!  The products are comfortable and I am not restricted.  I am now looking forward to resuming my exercise routine…..walking and running….hiking…fishing…hunting.  I know….I have 5 more weeks before I can return to work….to start easing back into an active lifestyle.  I will pace myself for a good, solid recovery.

If you or a loved one find yourself in a situation dictating your life to change, please take the time to educate yourself.  If it is an unplanned emergency, please take time to read all you can.  Remember…life has many twists and turns…..our attitudes are SO important.  Be positive…embrace the change….and know that you are not alone!

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