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Friday, January 31, 2014

Good days and bad days...

Good days and bad hard to explain. I am even having difficulty writing this blog lol Having an invisible illness, well it just sucks. But when you decline an invitation from  a loved one because you are having a bad day, sucks just as much. You can hear the disappointment in their voice. "Why can't she come out?" "Why can't she just sit at the restaurant?" "Really, she can't just sit in the car for a ride?" NO, NO and ahh...NO! No, I cannot simply just do these things.
Good days are few and far between lately. But when I do have a good day, I love it. I still have to calculate my energy and watch for signs that I need to go lay down. But it's better than normal. Good days, I want to be around people. I want to have a conversation. I want to go out to eat. Good days are less pain and a bit more energy. Good days are less tremor and better balance. Good days are my thoughts are clearer. My words come easier.  Love the good days!!!
Bad days...hate them. Sometimes, I have this flair of pain that will last for a week. The pain, oh the pain! I can't sit, lay or stand for to long. I have to keep changing positions constantly. Hurts to be touched. Clothes hurt to wear. Bras and socks, yeah right! Bad days are unable to hold a conversation. Too much thinking. Too difficult to understand what is being said. If there is a group of people, forget it! Too much chatter literally makes me ache. Voices are grating. Like nails down a chalk board. I know I have to seem rude sometimes. I will just walk away and disappear because I can't take all the chatter. Bad days are making yourself to get out of bed. The fatigue is ridiculous! Simply walking to the kitchen to get something to eat and walking back feels like you just run a 5K. Bad days are just wanting to be left alone. You have a short wick. You want the lights down low, quiet room and no one interrupting your peace.  Bad days also include depression. With the pain and fatigued heightened, so is the depression. Vicious cycle. Pain fuels the depression. Depression fuels the pain. You can't win! I'm not even going to explain the tremor, balance issues, losing words, saying the wrong words and forgetting what I was doing lol Wait, what was I saying? LOL Oh yeah, I think I explained enough lol
So, I hope this will help people understand what a good and bad day are like. And the difficulty it is to explain it all!

I pray for many, many, many more good days!
Love to all,

Wednesday, January 8, 2014

Pro Medical Marijuana!

As you can see by the marijuana leaf on the right side of my blog, I am a pro medical marijuana supporter. Why?? See the picture below...

The picture on the left is the medication that I take at bedtime. Only bedtime! This does not include what I take in the morning or during the day. Count them...yep 12 pills. (ok 11 & 1/2 but you know what I mean lol) Now, if the substances in the picture on the right was legal in Ohio, I could eliminate at least  10 pills at bedtime. 10!
Please don't think that I just want to sit around and smoke dope all the time. I'm not. (Ok, maybe during my teenage years but not now.) I just want the pain to go away. Pain fuels the depression and depression fuels the pain. Vicious circle!
I have read study after study about the medicinal effects of marijuana for pain, cancer, seizures and nausea. Even fatigue! Actual studies from reputable institutions.  I have learned that it is not the THC that helps but the substance CBG in the marijuana that is quite effective treating pain and fatigue. The researchers are also developing medicinal marijuana without the THC. So, you will get the effects of the medication but not the high.
I have been following Ohio Rights Group. This is a non-profit organization in Ohio advocating the legalization of  Medical Marijuana. They are very close in getting Medical Marijuana on the ballot this year.
Here are a few links to studies that have proven Medical Marijuana has helped with pain.

UCSF (University California San Fran)

University of Montreal

UCSD (University California San Diego)

This one is interesting. More along the lines with Fibro and marijuana use. It does have some info on certain studies. Check it out...

Fibro and Marijuana

I think that it is time to put the hippy, dead beat, stoner stigma to bed with Marijuana. I think the public should stop for a minute and read what Medical Marijuana can really do to help ease suffering. I feel that education is key in fighting any illness. The more you know, the better you can advocate for yourself.

Be well!
Jenn :0)

Monday, January 6, 2014

Going to the pain clinic..

Let's go to the pain clinic! Whoa! Hold on a sec! If you are anything like me, I just want my chronic pain to be controlled. I do NOT want opiates or narcotics! I do NOT want to be so "narced" out of my head, addicted that I don't know what I am doing. NO THANK YOU!
As a previous home care nurse, I have had patients that went to pain clinics and hooked on Oxy. I had one patient that popped Oxy like it was candy. Very scary.
So, my first appointment was today. My anxiety was high. My mind racing. My back in spasms. My hubby and I walked into the lobby trying to find the office. Front desk said "head straight down the hallway". We found the office with a sign on the door that read "only patients in the waiting room". Hmm...that's kinda weird. People standing in line to sign in. The waiting room was already full and I have people standing behind me waiting to sign in. Oh boy! I know what this place is...Oxy clinic!
The receptionist calls me to the desk and tells me that I am in the wrong office. PRAISE GOD!! I finally found the the correct office. No lines to sign in. Quiet little office. Wonderful office staff. I get called back. The pain doctor was wonderful! Gave me an exam. Had me twist and turn as he felt the muscles stiffen and spasm. "Well you have muscle stiffness!" No kidding?? As we talked about my pain he said "Fibro does not respond to narcotics". I said "I was apprehensive coming here. I do not want Oxy or other narcotics.". He said "I have a small practice. 200 patients. That is because I do not give Oxy.". GREAT! I left there with a treatment plan, better medications (not narcs) and a happier attitude.
Keep this in mind before you go to see a pain management doctor:
  1. Tell the doctor upfront that you do not want narcotics or opiates.
  2. If the waiting room is full of people, sitting, in line to sign in or behind you waiting to sign in...RUN AWAY!
  3. Take a look around the waiting room. Is it clean? Are the people sitting next to you sleeping with drooling coming out of their mouth? Is the waiting room full of people strangely quiet? If yes, they are all stoned on Oxy and narcotics!
  4. As always...self advocate!!!
:0) Jenn!

Thursday, January 2, 2014

New look for the new year!

Happy New Year!! May 2014 be a happy and healthy year!!
New look to the site!
Check out the new RSS feed feature!
Coming up is a new medication section that will have a bunch of info. Bare with me as it will take me some time.
I will be adding more humor and pics!
Thanks for reading my blog!
Love to all!