Thursday, September 24, 2009

Thankful (but cranky) Thursday

I am thankful. I am blessed in many ways.

I am just not feeling it today on the outside, but it is there on the inside, in my head.

I am blessed with 3 marvelous kids who give me so much joy and purpose in life, much more than they will ever know.

I am blessed with an amazing set of parents who give not only time and money, but the gift of themselves to me, Hubby and the kids in so many ways.

I am blessed with insurance. Even if it is crappy. Even if my the ultimate insurance situation is still not settled, I do have something. Better than nothing.

Hubby has gotten his head out of his butt, and as always hold my heart in his hands.

So far, so good, with regard to any terrorist activity in NYC. Maybe they did squash the right bugs so far.

I have coffee, I have wonderful pets, and nice house (even if it needs work done, so does everyone's right?) and a nice car that Hubby and I share.

My parents are healthy. My Hubby is health and MOST importantly my kids are healthy.

Here is the rub and the source of cranky. I am not healthy.

This complicates my life in many ways.

Yeah, the little tiff with Hubby came from it, it causes inconvenience. It causes frustration for my family with that inconvenience.

It causes pain. I don't remember the last time I didn't have pain. The best times are when I do a prednisone taper. Day 2 is usually the best because you get this super buzz from the prednisone where you feel like superwoman and it drowns all the inflammation and you feel like you can conquer the world!!! But prednisone is bad for so many reasons that I am happy not to be on it except for the rare tapers that I do.

Pain is a constant. Every time I roll over in bed, when I get up, when I walk, when I type, when I open jars, when I blow dry my hair, when I stretch to grab something, when I stand, when I lay.

Fatigue. Tired is something you get over. You sleep, you rest. You wake up refreshed.

Fatigue doesn't leave after sleep. It persists. Normal people walk through a world of chicken broth. I mostly walk through a world of pea soup. Hard to move through...

Then, there are the cognitive issues too. That is part of the pea soup. You don't think and react with the clarity you used to have. It is called RA Fog or Lupus fog or Rhupus Fog for those who are active in both diseases. It causes some pretty funny moments, and some very frustrating ones, too.

Nerve issues really suck. Nerve pain usually happens when a nerve gets stuck in the inflammed area of a joint.

That is what is going on along my jaw. It is apparently inflammed and causing spasms and strange icy hot sensations. It is not fun. Only my left side. It is the bottom of the trigeminal nerve. I am not happy.

My left elbow is a mess and my right hip and foot. Both my hands have several fingers sore and inflammed. My ankles are in their usual state of unhappiness.

I am overdue for a rheumatologist appointment and haven't had any bloodwork since May. I haven't been on the strong RA drugs since my reaction to the Enbrel in April. Or was it March? I can't even remember.
I am frustrated, fed-up, and sick of being sick. There is no cure. It never ends. It is an endless roller coaster loop of good days and bad days.

Usually, I let it all out and I feel better. Today, not so much.

Tonight is back to school night for Pumpkin. I don't know if I will make it. That upsets me.

be well...
(ps... being sick does clarify for you all that is good and important in life and usually that is what keeps me happy. I will get over my little pity party soon. Don't worry)


Beth said...

All I can do is send you a gentle hug, Dawn. {hug}

Missie said...

I surely understand how you feel. With both my son and husband suffering from Chiari, I understand about chronic pain!!

Sending you hugs!

D said...

It amazes me that with all the pain you can find the bright side to things but still I hope the pain starts easing up soon for you.

Rebecca Anne said...

I wouldn't see your thoughts as a pity party,but as your reality and I can't even begin to imagine how day in and day out frustrating that must feel.
I've always admired how you dealt with it.
It's good to read your words again!

Jennifer MacNeill-Traylor said...

I am so sorry to hear about your pain. My neighbor has similar problems.
Sending healing thoughts and wishes your way...

Traci said...

I so wish there was a cure for your pain. The ads make it sound like you just take their medicine and all will be fine. Wish it were true!

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