Saturday, December 19, 2015

Lost And Found

I'm in a scary place, honestly. At times. I've not been seen by a neurologist and I don't know what's going on with me exactly, if anything.  I'm kind of in a fog but I'm still having to take the lead on my life, so not a lot is getting accomplished. My motivation is low.

I've spent time trying to get my children's medical needs squared away. Being out of town and away from them is difficult. Being low on funds and not having a home yet is difficult.

Been in bed all day on the one day we were at the hotel. Resting. Dreaming. People in and out but I cannot stop falling deeper into this hard mattress and deeper thinking about marketing lol. Today has been bittersweet... Got rest but I really do love being on Broadway, so I missed it lol.
My head hurts but still no pills. I refuse. I did have to take headache powder (I know, same thing) but no zans, no norco, no everything else. Solomente cannabis.

"You cannot want to heal yourself if you are not willing to do research". I cant pretend that everyone with MS that doesnt come to a safe access state doesnt want to be healed. Finances are a major concern. But if chemo was only available in some " legal" states, how many people wouldnt come then. I'm just saying. Priorities and mindset. As long as my kids are okay (and they are) , I'm going to continue to let GOD heal my body and mind organically. I'm in Denver where there is safe access and have already been blessed to be back in the smoke shop industry.

See..Its about glass, and we love glass. I support it. Glass has been instrumental in my healing. No needles.

Love and light, peace and blessings... Walk in faith.

Why I don't take MS meds- Aubagio Rant

So I'm not being medicated right now.  I went to a new doctor recently.  He gave me Baclofen for my muscle issues and referred me to a neuro.  The issue is I can't get the doctor's office to send my referral over to the neuro that he referred me to.  I have called three times since the date of my appointment which was October 9, 2015.  Since then I cannot get a referral and it's so aggravating.  I told the doctor that I needed a neuro and a shrink and because his office won't send the referral over to the neuro, i'm pretty much stuck.  I don't know how insurance out here works, but this is ridiculous. Plus I don't even know if this neuro works with MS patients.  I'm feeling lost in the system.....again.

I know I need a MRI.  My head is hurting as I type this.  So aggravating that I can't get the medical help I need, which is one of the other reasons I've been taking control of my MS. "Feel Me" when I say I am so tired of these medications with a billion side effects, anyway. I received an email with Madeline Stowe, who happens to be an actress I really like.  She is a spokeswoman for MS as well.  Well, I'm not sure how FOR MS she really is after I saw what she was presenting.  Her dad had MS so she's really trying to help, but she's pushing a new medication called AUBAGIO® This medicine has so many side effects.  The presentation goes on to say it's not just risky for women who plan to get pregnant, but also for men who have partners that plan to get pregnant, and damaging to the liver.  They even have a special registry for pregnant women.  WTF is this medicine?!

This is why I am speaking out.  I trusted Madeline, to an extent.  I never thought she'd suggest something harmful, but this medication is just that. Harmful. As if MS patients haven't had enough harm done already. This is why more celebrities and government need to support medical cannabis (marijuana) .  Marijuana does not kill, it heals.  And even this Baclofen I've been prescribed to take has side effects, though not as much as AUBAGIO®.  With Baclofen, Drowsiness, dizziness, weakness, tiredness, headache, trouble sleeping, nausea, increased urination, or constipation may occur.  Right now the only alternative is Baclofen or severe body cramps. Or cannabis. 

I'm testing out different strains of cannabis.  So far "Wheelchair" is helping with pain and "Purple Bush" is working out okay.  There are some pain patches I'd like to try but finances for cannabis are very limited.  Broadway Smoke Shop is still donating a percentage of sales that are made on the days when Jesus and I can go there, and so that's really been helping with living expenses including my cannabis treatments. AUBAGIO® causes liver damage, and so do a lot of other MS designated medications. Risk of liver damage is what got me off all of the medications before.  I'm saddened to see an actress I like promote this treatment, but as of right now they have findings that it's helping.  
AUBAGIO® (teriflunomide) is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS).
  • Have severe liver problems. AUBAGIO may cause serious liver problems, which can be life-threatening. Your risk may be higher if you take other medicines that affect your liver. Your healthcare provider should do blood tests to check your liver within 6 months before you start AUBAGIO and monthly for 6 months after starting AUBAGIO. Tell your healthcare provider right away if you develop any of these symptoms of liver problems: nausea, vomiting, stomach pain, loss of appetite, tiredness, yellowing of your skin or whites of your eyes, or dark urine.
  • Take a medicine called leflunomide for rheumatoid arthritis.
  • Are pregnant. AUBAGIO may harm an unborn baby. You should have a pregnancy test before starting AUBAGIO. After stopping AUBAGIO, continue to use effective birth control until you have made sure your blood levels of AUBAGIO are lowered. If you become pregnant while taking AUBAGIO or within 2 years after stopping, tell your healthcare provider right away and enroll in the AUBAGIO Pregnancy Registry at 1-800-745-4447, option 2.
  • Are of childbearing potential and not using effective birth control.
AUBAGIO may stay in your blood for up to 2 years after you stop taking it. Your healthcare provider can prescribe a medicine that can remove AUBAGIO from your blood quickly.
Before taking AUBAGIO, talk with your healthcare provider if you have: liver or kidney problems; a fever or infection, or if you are unable to fight infections; numbness or tingling in your hands or feet that is different from your MS symptoms; diabetes; serious skin problems when taking other medicines; breathing problems; or high blood pressure. Your healthcare provider will check your blood cell count and TB test before you start AUBAGIO. Talk with your healthcare provider if you take or are planning to take other medicines (especially medicines for treating cancer or controlling your immune system), vaccines, vitamins or herbal supplements.
AUBAGIO may cause serious side effects, including: reduced white blood cell count — this may cause you to have more infections; numbness or tingling in your hands or feet that is different from your MS symptoms; serious skin problems; breathing problems (new or worsening); and high blood pressure.
The most common side effects when taking AUBAGIO include: headache; diarrhea; nausea; upset stomach; hair thinning or loss; and abnormal liver test results. These are not all the side effects of AUBAGIO. Tell your healthcare provider about any side effect that bothers you.
Consult your healthcare provider if you have questions about your health or any medications you may be taking, including AUBAGIO.
You are encouraged to report side effects of prescription drugs to the FDA. Visit or call 1-800-FDA-1088.

Please click here for full Prescribing Information, including boxed WARNING and Medication Guide.

Monday, December 7, 2015

Medical Badges and Slurred Speech

Today I saw a really cool medical badge.


I love this idea. When I first had my initial MS flare up, the first thing I told my boss was "I AM NOT DRUNK" . I was petrified and didn't know what was going on with me but needed her to know that I wasn't drunk.  Oftentimes people may confuse the slurred speech of a multiple scleroses patient with that of a drunk person's speech, but it is not.

Speech disorders are very common with MS.  The brain stem has a lot to do with it.  With MS, you have lesions in different parts of the brain and that can cause changes in the speech pattern.  It could be very mild and almost undetectable or it can be darn right outrageous and uncontrollable. I've had moments where I've even had something that sounded like Turrets.  There's nothing quite like having your tongue, mouth, cheeks, face go numb.  When tremors are apparent it's almost impossible to get things sounding "normal".

For me, when I notice it, I automatically try to slow my speaking down.  I've been to speech therapy before and it helped a lot with coping with speech problems period.  I also have bouts where my accent will change, but i'm used to that also. 
So when you hear me slurred out, just know I'm not drunk. I'm just being me.