The battle rages on...

So much has been happening lately. And I have such a horrible habit of closing off when the *stuff* hits the fan.

I'm in physical therapy again, for a little while anyway. Medicare isn't exactly conducive to continuous treatment with such a low monetary cap. I'm allowed a whopping 18 visits a year.

My muscle relaxer was changed yet again. It's Baclofen now, because the other one wasnt effective in low doses and the risk for liver damage was too high at the dose I'd need for it to be effective.

My doc wants me to work on coming to terms with my limitations and the inevitable scenario of a wheelchair being a permanent fixture in my daily life as my body continues to wear out. Which scares the utter crap out of me.

I'll be 26 on Sunday. This was so not how I imagined my life would be- even knowing I have and will always have a chronic debilitating disorder, I thought I would have more time before I had to think about losing *my* version of normal.

The hard part is not knowing how long I have or what will happen next. It could be years, or months. The only thing I do know is that it will be an uphill struggle all the way. And in the end, all the struggling, clawing, fighting for every bit of independence could be for nothing. I just don't know.

My physical therapist recommended that my doc sign a script for the trial for a TENS unit for my back pain. We've been using it for a few minutes at my sessions, and I'm cautiously hopeful that using one regularly at home will be another weapon in my arsenal.

I'm trying to keep my head up and just keep going, because as futile as things might seem, the only absolute I have is that if I do nothing...I WILL end up in my worst nightmare. At least if I'm fighting there's hope, however small.

I have a bunch of home exercises that I'm to do every day twice a day except for when I go in for my appointments.

I'm on 10mgs of Baclofen 3x a day, so that I can get accustomed to it again before increasing it. I knew starting off that it probably wouldn't do much at this dose, but I was really crossing my fingers that maybe I wouldn't need the increase right away.

I just want something to get better, even if only a little bit. It's not just the constant pain, fatigue, weakness, frustration, but the rest of life outside of the Cerebral Palsy. It all stacks up and just sucks the life out of a person.

Lexie, I would give the Baclofen a couple of weeks & let it get in your system real good before deciding you may need an increase. I was started out on 5 mg & it did nothing, she bumped me to 10 mg a month later & it really helped.

My cousin has fought long & hard with cerebral palsy. She had some really severe problems when she was born. From what the drs told her parents it was not a progressive type of a disease. She has some brain involvment, she was pretty jerky in all of her movements when she was young, this improved a lot because of all of the physio that she had for so long. She did a lot of drooling and even to this day she drools, but she learned somehow to wipe her mouth so fast that no one really notices what is going on. She and her sister were raised by their father & he refused to treat her any different than other kid her age & he would not let anyone else either. Our grandmother on the other hand would have made an invalid out of her had it been allowed.

I have to wonder with everything going on with you if there aren't other underlying problems that have been overlooked. If you think the Tens is helping,call your dr & push him to get the paperwork to your therapist. Take care.....Susie

I don't have any sage words of wisdom, but as someone who is nearing 26 and drastically had to reprogram my brain to what "normal means," I feel your pain. (Literally and figuratively.)

I work full time and do almost nothing else during the week, except sleep of course. I was shocked when one of my coworkers said she was going to do something "after work." I honestly forgot that that's a thing people do!

There is uncertainty in all of life, but even more when it comes to chronic pain and illness. I decided several years ago that I'm going to make the most of each day, and find something good in it. A few days ago, the best thing to happen was I nailed parallel parking. But I celebrated that. A few weeks ago, I willingly stayed up til 10 and could still function.

My uncle has had several chronic illnesses for over 20 years. When I first got diagnosed, I asked him how he manages to get up out of bed each day. He told me words I will never forget: "You sort of have to befriend your illness. Invite it into your life. It's going to be there anyway, so you might as well invite it along." So mine is named Louie. Sometimes, I spend whole days in bed spending quality alone time with him. Other times, I invite him along with me to whatever I'm doing. I don't know. Kind of silly, but it works sometimes.

My coping strategy has always been the opposite.

I've always seen Cerebral Palsy as my arch nemesis, and one of my main goals in life is to defeat it. Lol

Whatever works, right?