Eliminating Barriers

Eliminating Barriers

I hate writing publically when things are not going well, as you can see by the lack of blogging, things have not been all that easy for awhile.  I went through my private journaling and notes in margins throughout the past month and the message is definitely pain and frustration.

This past month has brought substantial secondary medical issues, medical problems due to the original medical condition.  Due to the location of the cysts in my spine several nerves and significant bodily functions are involved.  I have two cysts in the sacral area and a third in the sacral joint on the right side.  The latter has created itself out of the fluid from within the sacral joint; this causes discomfort and pain when I use my right hip.  The two Tarlov cysts cause more problems.  I now have a hole in my iliac bone on the right side from erosion created by the larger of the two TCs.  Nerve damage leaves my right foot numb, shooting pains down the leg and an inability to stand steady.  The involvement of the cerebral spinal fluid causes headaches and is complicated by dehydration.  In addition this causes symptoms to fluctuate daily, I might be fine one day and unable to walk the next.  Finally there is no cure and the only means of treatment is symptom management.

Since the first Tarlov cyst appeared following a car accident in 2005, my health has steadily deteriorated and the chronic pain lead to depression.  Then I took control of my health; I lost 85 pounds, ate nutritionally for my body, requested aquatic physically therapy (traditional PT can cause damage) and gave it all I had, and I quit smoking. 

I reached the level of using my wheelchair very little in the house and made incredible and unforeseen progress toward being less wheelchair-dependant.  Then the secondary medicals started to wreak havoc in my body.  After all my hard work this was a huge disappointment, which lead to another depressive episode.

In short (and without too much boring detail) the neurologic involvement has caused organs to become involved and this resulted in many backwards steps in my recovery journey.

I have not been able to attend PT in nearly four weeks, gained ten pounds, and for the last week and a half I have hardly been able to walk at all.  Basically I have lost the last three months of progress in a matter of three weeks.  This is frustrating beyond words to say the least.

Aside from the typical mother fears, my greatest fear is becoming a burden to my family.  When you NEED your ten year old to get through an ordinary day it makes you really think about what you might be taking from your child.  His childhood?

I was very young when my Dad died so I am sensitive to this issue and want to ensure they know that just because your Mom is broken, you are still the kids.  My own mother was amazing at asking for help but ensuring I did not take the worry that went with what ever it was at the time.  I strive to meet that balance on a daily basis.

That being said, I am a fighter and will never give up, even when I want to because I know quite a few people who would kick my ass if I did.  This is life, it is full of barriers and we just need to keep eliminating them.

Surgery will fix the most pressing secondary and then I can start over again at the pool.  I miss the pool and the people there, because of who they are I am sure I will be walking again in no time. 

A few days, okay weeks, of feeling like life is not fair and why the hell is this happening to me and I am ready to fight on.  There are a few people in my life who provide me strength and give me that mental attitude of, “If they can do that, I can do this.”  They have shown me that you can have the worst circumstances and still push forward with the right people, the right attitude and a toughness deep down inside.

Sorry, kind of a depressing piece this time but, it is my journey.

Take Away Thoughts:

ü  Eliminating barriers is what we all do, or need to do, in order to have the best life possible for our families and ourselves.

ü  We need to take control of our lives; it is true good things happen to good people, but not without hard work, determination and a positive attitude.

ü  Under no circumstances should you treat me or approach me with pity, but your support and smiles are of great strength so keep those coming!