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Discouragement

It is inevitable during our battle with chronic pain that we face discouragement. After all, we are battling on so many fronts!

We find ourselves struggling with the guilt that our longterm illness/conditions cause…as we watch our finances depleted and debts grow…knowing that we are helpless to do anything about it!

You may be fighting for social security disability like I am…finding that each time we get close to scheduling a hearing…that the “backlog” has pushed our case out yet another two to four months…

Add another layer.. .that with insurance changes that placed me into forced withdrawal as I awaited my prescription to be approved…

I could go on and on…the important point is to understand that we we will have ups and downs…no matter how positive we try to be.  Remember that our projecting a positive front wears on us as well! Our limited “spoons” are often used before we can get out of our bedroom in the morning!

Allow yourself a time out…a day to sleep…a day to watch your favorite movies…the time will help you to “reset”. Our struggles will still be there but our spirit will have been strengthened.

Financial Stress

I awoke from a light slumber this morning knowing that I had to try to reach out…to speak up about one of the big stressors that can weigh heavily on us. The unfortunate side of chronic illness…how it can destroy our finances. This thought was heavy on my mind  as my body craved sleep.

In my situation, it has taken me out of the workforce. My husband had struggled to find employment…always coming in second when interviewed!  Yet a door was opened for him to start his own business…which we see starting to grow.

In the meantime, as I am sure many of you can relate to, we have had to use credit more than we would normally. The medical bills (that will keep coming), groceries (especially when you add in those of us with special dietary needs), the high cost of insurance, house payments/rent, fuel costs, clothing, shoes for our ever growing kids, and on and on. Even with careful spending…being as stingy as possible…stretching every dollar as far as possible, we see our savings (if lucky enough to have any) disappearing quickly.  We are forced to look at selling our homes, taking out a second mortgage, or worse…find ourselves homeless.

It is important to take advantage of all of the programs possible. Remember, when we were “healthy”, we were working, paying into those programs.  Sign your children up for the reduced/free lunches at school if you qualify, apply for food stamps, seek out other possible assistance programs you may qualify for…this is not easy, I know. It requires a change in our mindset…to see these programs as an opportunity to receive some assistance during a rough spell. You may qualify for just a few…or you may qualify for all. Allow yourself to embrace this opportunity for some relief.

We put on a brave face for our children, our families, our friends. Yet this stress is one that we have little to no control over. It can increase our symptoms, resulting in Fibro Flares, IBS flares, bacterial infections, additional illnesses…causing us to go into a serious health spiral…as if we are not all ready dealing with enough!

Take time for yourself.  Nap if you need to…find ways to relieve your stress. I use writing as my stress relief…I also spend much time praying and reading scripture.  (Reading as best as one can with the Fibro Fog that is so variable…from a thin fog to a heavy veil.) I take advantage of the view out my window.  I find a silly science fiction movie to watch…or work a puzzle on my iPad…distractions that are a huge help!

This is a very difficult path we walk…yet…we are not alone! We can build each other up…through the many on-line communities, whether we choose illness/condition specific or more generalized chronic illness/pain sites. Remember you are not alone…even if you are primarily home bound like me.

Freshness of the Morning

 

img_5646The early morning light

Peering out between the clouds

The freshness of the breeze

Gentle against the skin

Like the touch of a loved one

Eyes close to savor the moment

The call of birds

The buzz of a lazy bee

The gentle roll of a fish

Its scales glistening

The water around gently rippling

Followed by silence

The quiet of the early morning

Senses aroused by the freshness

As nature awakens…

 

Insurance = Frustration

I am sure that everyone who has a chronic illness/condition has found himself or herself in the situation of being SO frustrated with Insurance.

I had received the call and all seemed set for my test for the pain pump.  I was excited…nervous…ready!  Of course, had to go off the pain med that had been helping…

Then the phone rang!  Insurance had denied my doctor’s request to allow the test to proceed. I immediately called my insurance company to find out why.  I was then told that they had not received the “MRI that showed the pinched nerve”….

What is wrong with those people????  I have no back problem….Insurance obviously paid no attention to the information that was presented to them by my doctor….

My conditions?  Fibromyalgia/Polyarthralgia/Chronic Pain Disorder….hmmmmm were does a pinched nerve in the back come in????  IF it was ONLY that simple!!!!!

Yes….I was exasperated…my body was then completely overwhelmed with exhaustion after the roller coaster!  Pain was elevated….even more than normal because of the lack of pain pills…

Needless to say….I crawled in to bed last night and gave in to complete….total exhaustion.

Now waiting while my doctor takes up the fight….he will have a Peer-to-Peer with my insurance company to push for the test….

Now back to the waiting game!  Hopefully it will only be a week or so before all can be rescheduled…

I am just SICK and TIRED of Insurance playing “Doctor”….they do not know what is best for me!  My doctors/specialists who are working so diligently to try to help me are the ones that should be allowed to do their best to help me!

Bent But Not Broken

10063326-native-tree-twisted-by-the-force-of-wind-sabinar-el-hierro

Just as a tree

Ravaged by wind and storm

So is pain to our bodies…

Pain ravages all

Mind, body, soul

Wreaking havoc on relationships…

Outer appearances

So grossly misleading

For this would truly be the view…

The world sees

One standing

Tall and majestic…

Yet the truth

Is like the image above

Twisted and bent from our battle…

Even so

We persevere

We live, laugh and love…

We choose

To “stand tall”

Even when we cannot leave our bed…

Our spirit

Strengthened by Faith

Family and friends…

Continuing to push

To share with others

Hope for a better tomorrow…

Use of Pain Medication

During my long history of dealing with multiple health issues and chronic conditions, I resisted the use of pain medication. I did faithfully use them after surgeries as prescribed; however, I was always hesitant to use for the day to day pain. The only reason I could say is because of stubbornness.

I have long used distraction and my mind to “ignore” the constant pain in my body. I know that this is the way that many of us choose to deal with our battle. We may fear the possibility of becoming addicted….of the side effects…of it not working…

We do our best to educate ourselves…I know that I am not the only one that researches medications and/or treatments that we discuss with our doctors. Because of our chronic conditions/illnesses, we are “educated” patients. We understand better than most the limitations of the medical community….we know that there IS no cure for our Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/etc. We know that only our symptoms can be treated….and often….the ultimate result is just having the “edge” taken off of our intense pain.

I cannot put a single finger on the reason that I changed my mind…to ask for additional help from my doctor. I know that I had been praying about it….I know that I was seeing the fear and frustration in the eyes of both my husband and son. It then became clear that I was being selfish in not attempting something!

I was able to discuss my change of heart with my Gastroenterologist…which was extremely helpful! We were able to generate several options of how I could counteract the side effects of the potential pain medications. This information and having the support of my GI further gave me the confidence that I had made the right decision.

This is just my second day with my new scrip. Yet…it has given me some hope. The intense burning that I had and my headache (not gone…just greatly lessened) are steps in the right direction.

My goal for the pain medication is modest…..I hope that the “edge” will be taken off so that I can gain some semblance of routine.

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.

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