Teaspoons of Time

When you are diagnosed with a chronic debilitating, life altering disease, everything changes!  It has for me in any case.  The way I think, the way I talk to people (sometimes this is good and sometimes not)!

Time is a very precious commodity!  I must measure out what I do and think about what the repercussions will be, before I make a decision to do or not do things.  And there are only certain people I am willing to use these teaspoons of time on or for!

My husband, my children and my parents are who I am able to make these measurements for.  These are the people that have ALWAYS been there for me.  I can’t say that about anyone else.  These are the people I can be myself around, no matter “who” I may happen to be on that given day.  Sad me, angry me, emotional or depressed me and thank God for now, mostly happy me.  Grumpy me makes a showing pretty much every day and more than once, I haven’t found a way to control her yet.

I will give these people unlimited teaspoons of my time, until I know the penance will be so awful that they will lose me for days or weeks at a time.  I don’t like missing them & them missing me and being “out” of myself for days or weeks at a time.  There are just things I can’t do anymore, risks I can’t take anymore and people/activities/events that are not worth that teaspoon of time and what it takes out of me!

My teaspoon of time is much more valuable than someone living a “normal” life.  My teaspoon is probably what might be a gallon to most folks.

I promised my kids I would spend a special day with each of them doing whatever they wanted (within my capabilities) during Spring break week.  My oldest just wanted to see a movie, that was easy – we were able to get recliner seats, so basically it didn’t take anything out of me to do that.  My little one wanted to go paint pottery and that was within reason, but cost me a lot of soreness and pain.  However – these 2 (the ones that hold my heart together) are worth TABLESPOONS of time and pain.

Certain people that may have been in the fold, are now out for the most part!  I have to save myself for my special ones – the ones who understand what that little teaspoon truly costs me in the long run.  It hurts my heart and it hurts the hearts of some others that this is the case, but we only have this one short life and I plan to spend it with those who truly want, need and appreciate their time with me.

Sometimes, often times, those who once held a high level of influence and loyalty in your life have to be left behind.  Most of these people left me behind years ago & I just had to learn to let go as well! Sometimes, we both just let go, as life goes on the way it will and things change.  And that is ok, life moves on and people change, priorities and people and situations change…  this cannot be changed!

Whether you have a chronic disease or illness or not, consider carefully who you spend your teaspoons with.  Maybe you should be scooping heaping amounts out to some and maybe you should be backing that amount down to a quarter, an eighth… or maybe none at all for those who are no longer worthy.

Teaspoons of Time

Don’t waste a drop

Time keeps moving

Tick Tock Tick Tock

My penance is pain

I will try not to let it reign

But are you truly worth

The time I’ve left on this Earth

 

Sobs in the Shower

For awhile, it was just an occasional happening, when I still had some hope and tried to be positive for my husband and my children.  After my injury – while I went thru it – it was probably every night for 2 months, along with many tears in the daytime.  Then, it was just sometimes, praying to God, asking him to guide the Dr’s to what was wrong with me, so they could fix it.  All along, it was there, knowing it could not be fixed.  Was it better not to know?

Since my diagnosis of Arachnoiditis, it is nearly every night.  The shower is my place of refuge, where I can break down and not burden anyone else.  Where I can spill my guilt for the things I can no longer do.  Where I ponder how I measure each “activity” with the price that will be paid later.  I cannot make exception for many things.  My family is my most important focus, I cannot spare much, but for them.  The shower is where the sobs can flow freely like the water sliding down my cheeks.  Where hopefully if anyone enters, they will simply see it as water washing off another day.  Where I can grieve over the parts off my life that are lost, where I can hope for a miraculous healing and ask God to place his hands on my unworthy earthly body and make things ok again.

It is amazing how hearing a diagnosis and “there is no treatment, there is no cure” can suddenly send that hope you walked in with hurtling toward a dark abyss you didn’t know was there all along waiting for that knowledge to be revealed.  They say knowledge is power, but sometimes it is fear and pain.

That dark abyss of knowing what may lie ahead is scary, it is hollowing.  Sometimes I feel so empty inside, it’s like someone drilled out all the joy that laid within.  Sometimes I think it is better not to have known, but then, I would still be searching for answers – not knowing that drain was waiting to drag me to the bottom.

When I come to my senses, I know there is still joy here for me.  My husband is an amazing man, many would just leave.  He takes care of me as promised, he is a rare find in this selfish, hateful, rotten earthly world.  I have my 2 beautiful healthy children.  I am grateful each day they are safe and healthy.  That is enough, these things have to be enough to get me through.

Most anything can make me cry, I am very emotional, very circumspect.  I am not who I used to be, I barely recognize myself.  My husband says I think too far ahead and worry about things that are too far into the future.  Things we do. It even know about yet.  That is me, I have always been a planner.  I’ve told him, I am just very easily overwhelmed by just about anything now.  One extra small task can send my body and mind into panic mode.  I feel like the anxiety will swallow me while some days.  I tell myself to breathe, one breath, one task, one step at a time and whatever it is will be done.  I am never truly alone.

So, I will go to my shower, let the teardrops fall and wash away and expel some of the guilt, anxiety and fear.  Pray for another low pain day, where I am able to do small tasks for either myself or my family.  It matters to me that I can help, if even in the smallest way.

I pray for my chronic pain acquaintances to be helped, I pray there is a cure in our lifetime.  I pray this disease will become the focus of SOMEONE, someone who can help, who will care about those of us suffering day in and day out.  I pray I can see the way in Gods plan for me, it is hard to see.  And maybe it hasn’t changed, maybe it is still to be here for my family in the ways that I can.  I will keep trying for them, I will do my best for them and leave the sobs in the shower as often as I can.

 

The girl in the mirror

I see that girl in the mirror – is that her really in there

She looks familiar, but I am certain, she is not really there

A reflection of someone I used to know, a soul wounded and cold

The outside is somewhat changed, exhausted and worn

A beautiful reflection torn into pieces, a reminder of loss that never ceases

Inside a feeling reflects a greater loss, covered by an unyielding moss

I can feel her growing ever small, although I seek each day to find her

The bright light that once shown, grows ever dim by the darkening loss

The trials of life have left her anxious and emotionally weak

Something else controls her emotions and is stronger week by week

She cannot find that place she seeks, where she never felt meek

A deepening sense of loss, it eats at her core

The guilt and the trials, God she does wonder, how much more

She knows she is blessed when compared to this worlds worsening war

The angels and demons inside her are also at war, eating away at her “before”

Before this disease, before this pain that at times makes her feel insane

Insane or inspired, the difference she must reach

Before she is lost in this storm and her door it does breach

 

 

 

 

 

 

Asking too much

When I got the diagnosisof Arachnoiditis, I was at first, completely ignorant.  Very quickly upon doing some internet research I learned that this was bad, could potentially become very, very bad.

My husband & I agreed that we would rather have me the way I am, doing little to very little activity, to keep my condition hopefully from progressing faster.

We visited my neurologist after educating ourselves and he told us that my condition was stable and he did not think I would progress.  He MIGHT be right if I continue to do nothing. I do know that sometimes doing even a few simply stretches, walking a short distance, spending more than 20-30 minutes at the grocery store or sitting in the wrong chair causes me to have a “flare”.  And from joining groups of people who have this condition & more reading, I have learned that I will probably progress and that the more flares I have, the worse and probably faster it will come.

So, I’m scared!  I don’t think the medical community knows enough about this disease to give any one of us an adequate prognosis.  And now, the government agencies are trying to ban pain killers.  If I am having a flare and need help, I am going to need pain killers (strong ones).  I’m scared I won’t be able to get them or afford them.  I’m scared that the thought goes through my mind that I would rather die than live day in and day out in a constant state of pain.

This pain is not fixable!  It is not going to get any better, only worse.  I haven’t even been doing anything and the past month or so I have noticed my right ankle bone getting more sensitive to the touch, random twitching in both of my legs and the few days a burning feeling in my right butt cheek!

When the Dr. told us at first that he did not think I would progress, we were relieved.  Now, I’m fairly certain that isn’t true.  But, I was relieved that maybe I wouldn’t have to deal with the loss of bowel & bladder control or eventual paralysis!  I was grateful that if I could stay where I was at, I would be grateful.  And I will be grateful for that!  I am grateful that I am not as bad off as so many others who cannot get relief and who cannot find Dr’s to believe there is anything wrong with them and that they do not need medication or help.

I am going to seek the help of a therapist.  I need sometime to talk to!  I mean I wake up & go to sleep thinking about this.  But no one wants to hear me talk about it and my worries everyday.  And I get that, who would, it’s depressing and overwhelming and tiresome. It is simply exhausting just having the worry on my shoulders every day.

I can’t do for myself without being punished by pain.  I have decided that if I get approved for disability, I will use that mo eye to try stem cell therapy.  That is the only possible hope I have at healing I believe.  Beyond sheer luck and the grace of God!

So, now that I am restless with the ida of being stuck in a chair (albeit only certain chairs) or a bed, BUT still having control over my bowels and bladder and NOT being paralyzed – I wonder if I’m now asking/hoping for too much to be healed further.  I’m not bargaining, maybe at times begging, yes, for God to help me!  But is to be healed asking too much or should I simply be satisfied with a “stable” condition.

I hate that I have to depend on my husband so much!  I’ve always been independent and now I feel confined and quite honestly, defined by this disease!

So, I need to ask forgiveness, forgiveness for asking for too much is what I am feeling.  I sit here knowing so many are so much worse off and need so much more help than I do.  Forgive me Lord for asking so much….

I call my life painful, but perfect now!  One of my favorite songs stays on my mind “every rose 🌹 has its thorn!”  “Yeah, it does!”  All my dreams came true finally!  Finally found a great man, 2 healthy children, but here I am with the thorn of arachnoiditis spoiling it all – painful!

 

I don’t WANT to be disabled!

So, in December, I did something I thought I would never have need to do!  I was embarrassed about it actually!  I went ahead and applied for disability.  My date of injury and the amount of points I earned while still working were just barely enough to meet my eligibility to even apply.  Not to say that I have not been working!  Being a Mom is hard work too, I quit a very well paying job because I had a difficult 5 year old that I needed to be more hands on with and whom my Mother could no longer handle, especially when it came to getting her to go to school.  I found out a week after I gave my 2 week notice that I was pregnant with my younger daughter, so I  told myself, this must be the right choice, it felt like a message from God to me!

Now, in the realm of this nightmare, sometimes I think I wish I had worked a year or two more.  Then I would have missed at least the 1st year of my second daughters life!  I had told myself that if I had another child, I would be the one to take of him or her and I would be there to see all of the little every day special moments.  I’m not sure giving that up would be worth while even to get approved for disability when my family & I need the support.  As you all know, things keep getting more expensive and especially the cost of health care, then the Deductibles and copays and prescription costs.  It never ends!

I should not complain, I know other people are in worse situations, it is just frustrating!  Of course, I was denied, which my husband says is the case for 70% of first time claims.  So, I went ahead and got a lawyer and I am  praying she can help me!  We need this second (small) income, we need help to pay for the insurance, copays and medications.  I am so angry because I am not faking and I know there are many people out there who abuse the system and are fine!  Well, I’m not fine!  I haven’t been fine for a long while!  I worked fo 20+ years and now I may not have the right points for the right date (according to social security).

I would give anything for this to have a fix!  I would much rather be able to live a life than to sit in a recliner or lay down all the time in exchange for not being disabled.  At this point I realize however worthless money & saving & plannin for the future can be!

We just never know what God has in store for us and it is sometimes a real struggle to understand how this could be his plan.  I’m still trying to figure it out, maybe I never will, until he can tell me.

The wrong chair

So, yesterday I sat in the wrong chair.  Many of you will ask yourself, How on earth can you sit in the “wrong” chair!  Well, my disability claim was denied and I am seeking the advice of an attorney.  So, yesterday, I typed up a 4 page document about what my situation is, my diagnosis, what I deal with etc.  It took me about an hour! An it’s a nice well padded office chair I was sitting in too!

Having Arachnoiditis, I must weigh the pros & cons of everything I decide to do against what the possible effects will be on my body the next day, days or weeks.  I didn’t really think that was going to have a huge impact on me,  but I was wrong.  My lower back had started to ache and I was feeling some nerve pain down my leg, which is pretty much normal all the now for me.  I was also getting some back fatigue.

Little did I know that activity would put in a great deal of pain today.  I woke up to a pounding headache, screaming ears and horrible pain in my low back.  I had to lay back down for several hours to calm the beasts within!  Thank God my 7 year old is such a good child and took care of herself and let Mommy sleep some of it off.

It is now the evening on the day before and my ears are still screaming at me!  My back is still killing me!!  I’ve taken pain pills, muscle relaxers, rubbed creams on and worn my TENS unit.  I have not retreated to using the big dogs yet because I need to be able to function tomorrow.  I have to meet with my daughters teacher and the attorney tomorrow, I need to be able to drive.  I took Gababpentin/ Neurontin early, but it will still leave me with some brain fog tomorrow.

The disability people think I should be able to work like this!  It is extremely frustrating that simply sitting in the wrong chair, YES the WRONG CHAIR for ONE hour can do this to my body.

This pushes me back into a fear & depression stage too.  I have to wonder how fast this will keep progressing, it goes through my mind over and over again!  These fears I’ve thought and appeased myself over dozens of times by now.  I’m praying to God to please lay his hands on me and heal me or lead me to a cure or some better way of handling this.

At last after I have sent my prayers, I remember my husband is safe and taking care of me.  My children are safe, healthy & mostly willing to help me.  My parents are also an amazing support to me.

I will stick with my original outlook as long as I am able – this life may be painful, but it is in so many, many ways also perfect!