Same Old Recording..
Another day, another symptom…Another test, another diagnosis.
Sound familiar? For many of us, this translates into de ja vu. When one is chronically ill, this is the typical day in & day out routine. It gets old. And I get old and older with each passing & redundant medical mush-filled day.
A couple of years ago there was a company who came up with a cleaver TV commercial for their depression medication. I still remember the funny, little woman wind-up doll. She would move across the floor slowly until she just stopped in place with her head hanging down over her body. Clearly, she was done. She had nothing left to keep moving. That’s a visual that I can relate to these days. (Except that I use my lawn chair cushion on my office floor for such moments). SjoDry is running on low reserves and clearly the “Five Hour Energy” drinks are not having their hoped for & intended result.
Don’t worry, SjoDry is not on the ledge ready to jump (though I am sounding a bit that way, aren’t I). It’s just one of those moments (hours or weeks) where you just get tired of being a constant patient. Granted, it’s the only thing I have ever known & that condition is my “normal” condition. It’s just that I have other things on my plate & on the horizon to be excited about and all of this never-ending medical search for answers & treatments is getting in my way of being blissfully excited without interruption. As in, Lord please give me a medical break for just awhile. I would just like to be consumed with joy and excitement without the reality of my copious & never-ending medical issues clouding my joy.
Not only that..SjoDry is almost (and by tomorrow) will be in full FEAR mode. All of the immune & autoimmune forces have now come together in a full-on SjoDry attack which has resulted in the need for a bone marrow biopsy tomorrow on Friday (Jan. 30th) to rule out Lymphoma. You would think that 20 or so past surgeries would have conditioned me to handle this test like my perfectly conditioned Marine son. HA. Not a chance.
I will admit to the world, that I am a complete & utter chicken for any invasive & painful test that I must be conscious for. Despite my suggestion that I would be perfectly happy and in fact, would prefer general anesthesia for this test, my input was dismissed by my Hematologist (with a chuckle no less). Did he really think I was kidding?
After the completion of this test, I am once again launched into the frustratingly familiar condition of W-A-I-T-I-N-G. See previous blog post: https://sjodry.wordpress.com/2013/05/14/patience-grasshopper/
My life is starting to remind me of a 45 rpm record that’s gotten stuck.
Somebody please play a new song. I really don’t want the title to be: ” Kill Me Now “. I think that title would be best reserved for my 3:00 appointment tomorrow. If you hear a piercing scream from Pittsburgh, you will know that it’s me.
I’m trying not to let my mind get too carried away with a potential cancer diagnosis & what that treatment would look like. Or how mad I would be if I lost my hair after having taken so long to grow it out.
Perhaps a better title today would be, ” The Ramblings of SjoDry “. But what this SjoDry ramble underscores is the chronically ill patient’s daily experience. I think one big difference between the average “well” person and the chronically ill person, are the components of life that allow us to feel/be ” well-rounded ” & experience a wonderful quality of life at will. The chronically ill person is robbed of those experiences. We are forced to live our lives on the couch; in bed; in hospitals; in doctor’s offices, etc. with no choice, voice or control. Our positive experiences, when they happen (and they do happen), may often be veiled in pain & with limitation. That’s not to say that we don’t have happiness or joy in our lives, only that there can be limitations in how we experience it.
Okay, enough of my ” I’m angry at being a perpetual patient ” rant. I know that all of you fellow Sjoggies join me in raising our collectively clinched fists (gently) at this world of medical unfairness!
Another day, another test and hopefully NOT another diagnosis…
May the lidocaine be with me!! And if anyone dares to say, ” Little pinch”, they’re dead!!