Saturday, January 04, 2014

A Rose by any Other Name...

Another week has gone by, and Wes is withstanding his radiation and chemo in remarkable ways.  He feels fine.  He has tons of energy.  He's working.  He's doing chores around the home.  He is cheerful (except when he thinks about possibly not being around to take care of his family...then he gets teary eyed). 

I am praying that the chemo and radiation, but most of all prayer, makes it all go away (which would be a miracle).  I am praying for healing or for many years of remission. 

Because physically I am not doing well at all.  The debilitating fatigue and pain I deal with is worse than ever.  I take my vitamins, my meds, get sleep, eat healthy food, exercise when I can....nothing helps.  It just is. 

I've been reading about Chronic Fatigue Syndrome lately.  I was under the (apparently mistaken) impression that Fibromyalgia and CFS are two manifestations of the same illness (this being the medical opinion expressed by Dr. Paul St. Amand in "What Your Doctor May Not Tell You about Fibromyalgia", the author of the guaifenesin protocol that my diagnosing doctor put me on.  All this time I've been like  "of course I have CFS, that's the same as fibro and for me the fatigue is worse than the pain"....but now I'm talking with other sufferers and reading articles and it seems the mainstream medical opinion is that they are two different things.  So now I'm wondering if I should get a new diagnosis, or what?  Would it matter?  My LIFE would not be any different?  I would still live under that cloud of crushing fatigue, paying for normal activities with days of feeling sick, fatigue, pain and recovery time, having to carefully manage every morsel of energy, exercise intolerance, etc..  What would change, really?  A rose by any other name...

I hate being chronically ill.  It's all in my own thoughts, but I feel judged.  I wonder all the time if people think I'm faking it, if they think I'm lazy.  Why do I care what people think?  Nobody ever says anything to me, so it is really just all in my head.  Lord have mercy. 

So, I'm wondering about all of that.  I'm feeling pretty darned sick right now.  It's been more than 90 days since Wes had his ONE seizure episode, and he's on Kepra and he's feeling better than I do...so he is driving again. 

I heard about someone with Glioblastoma who did the chemo/radiation thing and went into remission for FOUR YEARS!!!!!  I'm praying for a similar miracle for Wes, if not total healing. 

God be glorified in all things, no matter what.  I'm trying to teach myself to live in the present moment, and not freak out about the future.  Because I don't know what the future will hold.  And right now, I NEED MY HUSBAND, and I have him.    So, glory to God for that mercy. 

6 comments:

elizabeth said...

the stress and shock of all of this I am sure is also making you very tired. How much we are all praying for a miracle. Praying for all of you daily.

Matushka Anna said...

Indeed, we are all praying, not only for peace and strength in the present time, but for complete healing!

Barbara Creasy said...

Praying for you all, as always. Stress can cause fibromyalgia to flare. I have this, as a secondary diagnosis, along with lupus.

wolflady said...
This comment has been removed by the author.
wolflady said...

I too have fibromyalgia, diagnosed 15 yrs ago. I now since last Jan am chronically fatigued, Dr won't even acknowledge. I have noticed emotional stress makes me really fatigued, I like you can sleep for days after I do certain things or deal with too much stress. Don't worry about what others think, just do and handle what you can. I don't know what you take but you should try spirulina and chlorella they are both types of algae they do help. Praying.

Kathleen Foley Geiger said...

Praying for you both.