Really LONG post!

July 4, 2009 at 4:18 pm

My story is much like yours, Dick. Came on slow over a long time then right before Hurricane Ike – bam – right between the eyes. Sigh. But the one thing I know for certain is that life is not for sissies as everyone has challenges – just different ones for different folks, so I don’t waste a moment wondering why ….

After 30 years of marriage I found out my husband had a secret life since he was 12 – which kept growing until … oh well, as my Russian grandmother would say, “B’nough!” of that subject … that’s been almost 3 years ago. But I feel it was preparing me for this challenge! And I learned a very BIG lesson about outlook through that experience. I really like your quote. Mine is “A glad heart makes a happy face” from Proverbs 15:13.

For some time now, pain is my constant companion. And I find that living alone can magify everything as I don’t have built in diversions.

But I also am determined to make the absolute best out of any situation I can. Until this hit me so hard, I was dancing 4 nights a week and having a blast! Love the West Coast Swing, Salsa, country and anything with a beat! Now I go maybe once a month for about 1 – 2 hours after getting ready by taking hydrocodone and having my best friend drive …

I was very high energy and am finding a big challenge in sitting still. I understand what you are saying about feeling better and doing something you know isn’t good for you, but doing it anyway. So I decided not to do that anymore. I try to save as much as I can of my energy and focus for work, church and play and accept the help that is offered me and pay someone to do the rest or ignore it. Have to find pleasure where it presents itself. I love to garden, now I pay someone to weed for me and sit in my garden reading a book (which I also love to do).

So I had to do several things to continue finding pleasure in living – get this awful pain under better control and change my focus. I have to work full time, so my doctor made a pain mgt cocktail for me. Right now I take 4mg Tizanidine at breakfast and 4 mg again at lunch, 300mg Gabapentin at dinner, then 600mg at bedtime plus 50mg Nortriptyline and 1mg Klonopin, with 10mg Hydrocodone as needed. When I wake up, think Johnny Depp in Pirates of the Caribbean 2 steps forward, 3 sideways, etc!!

At times, the pain is still unbearable, so now my doctor is trying me on Namanda. It was developed in Europe specifically for neuropathy pain. However, it was found to also slow down the progression of Alzheimer’s (so maybe the side effect will be good!), so that is all our FDA has approved for its use. But my doctor works miracles with my insurance and I started it last week and feel a slight improvement. It will take 4 weeks before I’m at full dose and then, if it’s working, my Dr will start weaning me off everything else.

I have 2 days of IVIG every 4 weeks and also have physical therapy 3 times/week – mostly stretching that seems to help a great deal. My doctor also gave me a prescription to get my hot tub repaired (ins didn’t pay, but Uncle Sam acknowledges …) and so I spend an hour or two every night under the big Texas sky while the bubbles and heat reduce my pain significantly. I even have a TV out there some nights!

Inside my house, I also have a massage/heat pad for my back and 4 heating pads rolled up like tubes (held together with rubber bands) to use on each arm/leg. Helps significantly. Last time my daughter was home from a visit, she bought me a power strip so I can plug all 5 devices in at one time – it’s too funny to look at but works oh so good!

I also am on a B complex from Wellness Support Network called “Nerve Support Formula” that is also making a big difference. I feel a big difference between when I’m taking and when I forget to order more (hey – maybe the Namanda will help that!!). I am very careful with my diet and use the recommended vitamins and supplements from the book, Nutrients for Neuropathy. I can tell a difference when I get lazy in this area.

So that’s what I do for pain, which still isn’t always enough … and so to change my focus, I have two journals I’m keeping – one is a praise or thanksgiving journal and one is a humor journal. Everyday, I can find something to be thankful about … and so I write it down and read when I feel down. Additionally, it’s a good thing I like sitcoms, because I am one right now! This is long enough because I was trying to address pain, but sometime I will share some stories from my humor journal …

Hope you find something useful in my ramblings and the read was worth your time!

Happy 4th!