Hi Debi
I I am so sorry to hear that things have continued to worsen, and at a fast pace. It makes perfect sense that you would be having a hard time dealing with it. Your goals are so much like mine, and also so much for the benefit of your family rather than yourself, that I can really empathize. It is so difficult to adjust to not being able to be the perfect homemaker. Since I was a stay at home mom I felt that was my major contribution, and now I feel pretty worthless.

I am only able to stand long enough to cook, or to food shop, because of the pain medication. (MS Contin). Both activities take a toll. If I go to BJ's it is ironic that I come home with$200 worth of food and am too exhausted to cook any of it. That is a take out day. I have also had to simplify meals tremendously, I have a pampered chef covered baker that makes chicken breasts in the microwave and is a huge time and labor saver. My husband or son do most of the food shopping.

I have never considered a spinal cord stimulator, but my dentist, of all people, recommended a pain pump because I was grinding my teeth at night in pain. For now the pills are working well enough so I am not looking to make a change.

I am not able to houseclean, and I never will be. If I sweep and mop the floors I have pain in my hands and arms for days afterwards. Reaching into corners or tubs I fall over. I have a dear friend who cleans for me when I ask her (I do pay the going rate) unlike a cleaning service she does what I need and I don't have to clear up all the clutter first. I actually rested on my bed while she cleaned my bathroom and we chatted. When I had a regular cleaning lady I had to straighten everything up and get the whole family out of the house for the day, it was too stressful.

It bothers me tremendously that the house does not usually look very presentable. We have dogs which shed constantly, a shepherd and a pug, which makes it worse. I go into a mini frenzy when my son's girlfriend comes over, girls notice things more than guys, but there isn't much I can do besides make him vacuum. I burn a lot of candles!

I haven't been on the forums for a while, too much going on at home, fatigue levels much higher than usual. For me it is gradual, two steps back, one step forward. My daughter has been diagnosed with severe acquired scoliosis, at 30, after two babies. She had a clean EMG and I thought she was CMT free, but this seems suspicious to me. My biological sons both have it, but neither is likely to have children, one is engaged but slightly autistic with severe CMT symptoms and afraid of his genetics being passed down, the other has a girlfriend on meds which make it unlikely she would be able to have children.

I hope that you find relief soon. I believe that there is a medication or treatment out there that can give you some quality of life back. It seems cruel that you have to wait three months for an appointment.