I don’t feel sick

[Pete]

Thirteen years ago today, I was diagnosed with GPA. I remember asking what the heck is that?? Bad news: Its not curable. Good news: It’s treatable.

About twelve years ago, I found this forum. I believe it helped save my life. It led me to Dr Alexandra VillaForte who has guided my treatment since 2012. She’s an excellent doctor!!

I’m now 77 years old (How did that happen??!!). I don’t feel sick. I have some issues such as peripheral neuropathy in my feet, about 20 pred pounds that I haven’t lost, and lost flexibility in my core. But, I’m able to walk about three miles most days, play bad golf in summer, and putz in the flower beds. I’m in pretty good shape.

The purpose of the above is to assure the newbies on here that if you follow your doctor’s guidance and invest in yourself through exercise (at a level that you can handle), nutrition, and effective medication, that a comfortable lifestyle is possible.

[andrew]

Great post, Pete! Completely agree, particularly the exercise part. That can help more than just physically. It's good for mental health as well.

[novastorm]

Great post, Pete! Completely agree, particularly the exercise part. That can help more than just physically. It's good for mental health as well.

I was diagnosed 7 years ago, and have had the same experience. I do have neuropathy in my hands and feet, but overall, am feeling great. Exercise (and meds!) is key, I think.

[freakyschizogirl]

Happy Disease-versary Pete - i have also been diagnosed 13 years this year.
It's been an education, that's for sure.

I think i found this forum within days of my diagnosis and i am so very glad i did.

[mishb]

Great post, Pete! Completely agree, particularly the exercise part. That can help more than just physically. It's good for mental health as well.

I can admit that I really suck at this exercise part. I am just lazy.
I could do it if I wanted too, and do when I'm travelling for holidays, but when I'm at home, forget it.

Great post Pete.
14 years for me this year, and you are correct, I don't look sick, we don't look sick.
I know I would be much worse, without the guidance of my specialists, and also from people on here.

[CapeKay]

Thanks Pete. Your posts always lift my spirits. Peripheral neuropathy is the next symptom I will tackle by hopefully seeing yet another specialist. I was hoping that would get better too but it has only gotten worse. Are you treated for it?

Kathy

[Pete]

@CapeKay

Hi Kathy!

I am being treated for neuropathy. I take 300 mg of Gabapentin about an hour before bedtime. It calms the tingling/pain for about twelve hours. I don’t take it early in the day because a side effect is drowsiness.Thus, it also is a sleep aid. I sleep soundly for 7-8 hours. I’m a little slow getting going in the morning, but hey, I’m retired. On school days, I’m still alert enough to drive my granddaughters to school.

Neuropathy just affects my toes and occasionally farther up my feet. It’s annoying, but not debilitating. It gets progressively worse as the day progresses. If it really bothers me, I’ll take 500 mg of Tylenol every four hours.

Gabapentin is a prescription med. It’s primary use is to control seizures.