Monday, July 02, 2007

Dialogue

MtMS has readers! I'm not just whining (entirely) for my benefit. Yippee.

Being sick and being in pain is just one of the FUN AND EXCITING parts of having an autoimmune disease. But let's not forget the joy that can be found getting diagnosed and receiving treatment. Because you haven't lived until:

  • paper is jammed in a not-so-pleasant fashion into the lower eyelid; the eye that is dry, no less, and doesn't want to be messed with
  • a resident 'performs' a spinal tap, biffs, and you get poked again
  • the headache that follows
  • and the we just don't know what's wrong with you...

I could go on and on, but I don't want to brag.

Here's some thoughts after reading recent comments:

  • The neurological symptoms are a big drag. They are considered less common, and I think, misunderstood. I saw a reputable neurologist and we still didn't come up with any answers. No one thought it was autoimmune, even with the positive ANA. Until. Until a high frequency showed up on a brain MRI. Even the doctor dismissed it, but followed through with more tests. I have often thought that if I had complained about my dry eyes earlier, we may have arrived at a DX earlier. But because my chief complaint was neurological pain, numbness, and fasciculation (twitching), I think it took longer. The neurologist referred me to the rheumy doctor - maybe that helped...
  • I don't know where I was going with that...
  • Another thing I've come to appreciate from both doctors -honest, however, vague answers.

Me: So, are my cluster/vascular/I-want-to-stick-a-key-in-my-eye headaches from Sjogrens? Is the nerve inflamed?

Doc: Maybe. Could be.

Me: Hey, I ache more than my Grandma. I'm sporting orthopedic shoes...Is this related?

Doc: Hmm. Maybe.

There's a pattern. I think it is because these things are tricky. They shape-shift (sorry to go all Star Trek on ya). Everyone 'does' it differently.

So like parenting, politics and religion, every one got a horse in the race.

I just pray my horse can get up and go.

2 comments:

sassy said...

WHINING

Honestly Lisa, my theory on the whining is this:

Every week there seems to be another chronic pain with this Sjogrens. And every week I end up at a doctors office begging for an answer. And every week that doctor (or those doctors) says, 'no, I don't think it's Sjogren's related.' And then we are sent to a specialist. And they don't know what it is either. In my situation.. nothing is showing up in x-rays or MRIs. But I have pain, I can no longer play tennis, I can no longer surf, I can no longer appreciate the ease of just walking down the stairs into the subway station. Of all the doctors I am seeing or have seen.. not one of them has stated 'we are going to get to the reason behind your pain.' I am tired of trying to convince the doctor's of my new ailments. The Rheumatologist makes me feel as if every patient comes to him with complaints... and I should just pick a number. So, my theory is that we feel we are whining because 1: Every week we have a new ailment and are unable to get answers and 2: the doctors (atleast mine) are not that passionate to helping us figure out what is going on. Yes, I know I could just be speaking in terms of myself and you might have fantastic doctors... but I just don't feel like it's fair that it seems we are always 'whining.'

Our bodies cannot do what most people's bodies can do. And it is very difficut for these others to comprehend what we feel. Honestly, I was once very athletic and always on the go... and all my friends I have made were through such activities. Now I feel left behind as I cannot keep up with them. So I complain. How's that for whining!

So some of you may find this interesting. Personally, after reading other Sjogren's nightmares, I think neuropathy and rheumatoid arthritus is just a given when one has Sjogrens. Please, someone, step forward and prove me wrong!

Ok, here is the interesting part... my father is a retired surgeon with a successful resume behind him. When I was growing up, thru his contacts, I always had the best treatment for any underappreciated insignificant ailment. He was always there, supportive as ever, helping me get to the bottom of any health issue I had. Why should that change, right?
Now that I have been diagnosed with Sjorgren's... he has turned into that same familiar doctor that makes me feel like I am 'whining.' Yes, he knows I feel dry and get dry nasty coughs and eye problems... But any other secondary ailment to him is unrelated to the Auto Immune. I have never had problems walking before dignosis. I have never had tingling in all my limbs until recently. But he refused to believe that it is Sjogren's related until it is documented in some scientific journal. And until then, to him, I will just be 'whining.'

So all of you out there, feel free to complain as I have to you. I promise, I am here and I will listen.

Peace to you, your families, your bodies and your minds. Happy 4th.

Linda in NYC, 35 and wearing the same ugly orthopedic shoes while staring at my overly sized pill box.

Tammy/dxunknown said...

Yup... I'm a whiner, too. Just tonight I tried to tell my husband about my dr visit today and you could almost "hear" his facial expression going blank. I've come to conclude that people just aren't as compassionate as we would all like to believe. As a teenager, I sat with my great-grandmother every week day of one summer vacation... emptying her potty chair, whiping her rear, feeding her at times... and never once did I mind it or complain. My reward.. my family grimmaces over simply having to "listen" to me. You will always have an ear here! Listening is an EASY favor! With the added bonus of learning from those who suffer some of the same symptoms I do.