FAIL!!

February 27, 2013

Sunday night my charger blew so I was forced to be up on my walker. That was a blessing in disguise! Day one – so much pain, I was just plain mean and rude. Lying down brought no relief. Day two – Significantly less pain but it still hurts. Day three – Still hurts but I’m less cross.

“That scooter is not your friend,” My physical therapist and Pilates/Yoga instructor friend tell me. It’s so true. The only way to get over this hump and be less handicapped is to just get up and press through the pain. It’s hard and it sucks but I have no choice. Weekly exercises are great but they won’t suddenly make me walk again. That must be forced and the time is now. I’ve been primarily on my scooter for a year and a half now and my body is so weak. If I keep sitting much longer, I may never recover.

I’m walking around! My circulation is increasing and my muscles are growing. The pain is temporary. The increased circulation will also decrease inflammation! Did you know that? Neurologists obviously don’t. Google does. Inflammation is an enemy to so many discomforts and illnesses. It exacerbates MS symptoms and increases pain.

Three biggies in our diet that cause inflammation are gluten, dairy, and sugar. (Corn and soy contribute as well.)

Story #1 – A neurologist I used to see at St. Thomas warned me that inflammation will affect my ability to walk. He wanted me to take steroids monthly to reduce inflammation. Never once did he mention dietary changes and CIRCULATION as being helpful. Fail.

Story #2 – I saw a new neurologist last week. I was hoping a fresh opinion might jolt my hopes. That didn’t happen. When he saw my very purple feet (poor circulation), he said, “Wow, your feet are so purple.” This comment was not followed by “Are you standing/moving at all?” Common sense would urge a patient to increase CIRCULATION! Instead, he talked about how I was a potential “candidate” for some drugs. Fail.

My list of stories does not end there. I’ll just skip to the conclusion… HEY NEUROLOGISTS! You. Have. Failed. Me.

If an ordinary person can learn that circulation reduces inflammation, why don’t they teach that in medical school? Why don’t they teach nutrition in medical school?

Thanks to the internet, we can learn these things on our own and take our health into our own hands.

I will no longer sit in a doctor’s office full of chotchkes from pharmaceutical companies – calendars, posters, pens, coffee mugs, etc. How insulting!! No wonder medications cost so much. They have to make that extra profit to manufacture mini hand-held fans with a drug name on it. Just wait until the government takes over healthcare. These enraging situations won’t get any better. Mark my words.

For Baclofen Users...

Obvious Disclaimer: I am not a doctor and I understand medication may affect others differently. This is just my experience, a little internet research, and my personal opinion.

A couple of years ago, my neurologist at the time prescribed Baclofen. He prescribed two 10 mg pills four times daily. Woah – 80 mg daily! I never once followed those instructions. I did take 2 per night to start. It was so refreshing to wake up looser, no muscle spasms, and no leg tremors. That part was fantastic.

The part that wasn’t so fantastic was that I was a zombie! I could have slept most of the day. So I went down to 1 per night. Still… a zombie. So I cut the pills in half and took 5 mg per night for a while. Eventually, I wanted to stop taking it altogether and the short but horrendous withdrawal ride began.

If you are wanting to stop taking it, Google the symptoms and make sure you ask a doctor about it. I didn’t do that. After a seriously insane and uncomfortable week, I finally looked it up and read these withdrawal symptoms (among others): Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, dizziness, nausea, feeling faint, inattention, memory impairments, perceptual disturbances, pruritus/itching, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.

Eventually, the ride ended and I was off. Now that I’m free, I’m able to take one every 7-14 days. I can now experience the relief the medicine brings but I’m not locked in a prison knowing the crazy train ride I have to take to get off.

So my experience and opinion tells me this:  I think that the medicine must build up in the body. It can cause debilitating sleepiness. But when taken responsibly, I do so enjoy waking up relaxed. It’s a wonderful feeling. But those good mornings just can’t come daily. I’ll enjoy 2-3 per month instead. Be careful, my friends, and do your research.