Marijuana

I have never tried marijuana, except if you include the time when I was 10 yrs old and 2nd hand smoke was continuously blown in my face, while I was pinned down….I don’t remember much of an effect though.

I have to admit.   When I think of pot...I remember images I have seen from the movies of what being "high" looked like.   Glazed eyes, slurred speech and the unmistakable urge to eat Doritos.   "Pot Heads" was always what they were referred to and these people were reckless and irresponsible. (And they usually had to 'do their business' illegally)

Don't stop reading and get angry -- Like I have said before, I am a work in progress.

Recently, in Colorado, the buying and selling of Marijuana has become legal.   I wasn't shocked that our news has reported "record sales" and "lines around the block" from people who can finally use this stuff, without worrying about going to jail.  

All the reports and studies taken from people who smoke weed, indicated the stuff is safe.   FAR better (and safer) than alcohol, and much more preferred than prescription medication.

I have a lot of friends that use marijuana...I thought I understood why they used it....But it wasn't until I REALLY began reading about it, that I understood the real reason.   It isn't about just some relaxing - stress-relieving side-effect...Although, that is a bonus.

Every-Single-Person I have talked to, told me about how marijuana relieves their pain...Reduces their headaches...and helps them get better sleep.

Below you'll find a sampling of responses from several of my online friends – most, but not all, claiming or hoping marijuana, medical or otherwise, can help with NF symptoms, including headaches, tumors, and better sleep. Some say it reduces tumors, but I hesitate to sign off on that without more medical studies to back it up.

I can't say I'm ready to run down to the local MJ Shop and plop down $250 for a few ounces of weed, and I'm not sure I'd even go after a medical prescription. At least not at this point in my life.

But my husband asked me if I'd accept a medical marijuana prescription for our oldest daughter, who, now 18, suffers more than any of us, between back pain, headaches, and frequent nausea. It made me think, and think that I just might.

In the end, of course, I can only judge for me and my family. And with only two states on board with marijuana outside legitimate medical usage, I certainly won't advise you to do anything that will land you behind bars.

But perhaps the time for the old Cheech & Chong stereotype is over – and we need to recognize that correct usage by responsible adults may be no more harmful than having a beer as you watch the game, and may be dramatically more helpful than the medicine cabinet worth of prescriptions doctors seem to have little problems prescribing.

Thrive On – and inhale if you must :)

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So many responses:

Anonymous - My son is about to turn 12 and has NF1. He has had multiple surgeries and has twitches and stings up and down the body plus most all other NF symptoms. He uses the whole Marijuana plant dried and ground and put into capsules. I have a medical card for myself this is how I get it for him. It helps him not have nerve stings and helps him stop his pain. instead of taking oxy, hydro, or Neurontin that he is prescribed. I also use an oil high in CBD and low in THC which is medicinal without the "high" involved. He likes his plant medicine above the pharmacy meds.

Anonymous - My son tried it and said that it made the pain worse. He is in chronic pain all the time and is also requesting that the nerves in his spin be severed to stop the pain in his legs.

Anonymous - I have NF1, and I was just diagnosed with RA/PsA and Raynauds Disease/Erthromelalegia all things that are very painful and progressive. I really can't do Narcs for the type of pain it causes me these new diagnosis on top of all the NF, BS hasn't left me with a very good prognosis and a family member recently started me on smoking a little here and there. Not a lot to lose my brain but just enough to try and take the edge off and maybe be able to relax. I do think they should make it a legal medicine as they do for cancer and some other diseases. I do feel ashamed and sometimes guilty about it at times and I would hate for my 13yr old son to ever know and my boyfriend even asked my DR in front of me if it would be ok if he got some for me and the DR said just don't tell him about it when we do...I don't do it all the time and I never drive when I do so at least I try to be responsible about but still struggle feeling guilty.

Anonymous - Its really amazing for pain. Better than other pain killers. I find that I can function more than with painkillers

Anonymous - I am trying like mad to get a medical marijuana permit here in Vermont. I have never touched the stuff until my husband convinced me about 3 months ago. He had a guy at work make me a "choc" candy (like a Reese's cup I could only eat part of it.. it took about 1/2 hour to work. will have to tell you something, this is the best sleep I have gotten in years. It was able to take the pain off -so that I was able to relax. I have had 3 choc. since and a candy like a life saver. We know how to make our own choc. so if we want to we can. I want to get legal as I am afraid to go to jail I have so much pain for a straight week at a time only 1 time a month.

Anonymous - I personally use it and it does help with my pain more than medication-- it does not relieve all the pain but it definitely helps more the medication.

Anonymous - Hey Kristi.......I treat myself with marijuana for NF pain. I've been going to a Pain Clinic in NH (I live in VT, and am closer border wise to NH than VT). NH won't give me a prescription, b/c I live in VT and they are in NH. If I were to go to a VT pain clinic, I would have to travel 1 1/2 hours.........IT DOES HELP!!!! I wish I could get people to understand this.

Hetty - My hubby uses cannabis and amino acids to manage chronic pain as a result of 20 plus surgeries due to NF1.

Michelle - here in VT we can apply for a medical permit, I am trying got get a permit as I speak.. you don't have to smoke it you can make it into candy, choc. or anything. For me, well lets just say I hope I can get legal. I have never gotten better rest and relief of pain

Amber - If I could use it for medical use I would. I've never heard bad things about it unless you abuse it – duh - lol

George - Weed is a magical herb it helps with pain, anxiety, depression, glaucoma, eating disorders, anger issues, insomnia, Yeah this shouldn't be legal but you got cigarettes that kill people, alcohol that makes people violent and over dosing on it all the time, pills that people take a hand full of and go to sleep and not wake up. It's impossible to over dose on pot you'd have to smoke like 10,000 blunts good sized ones at that and even then you'd over dose on carbon monoxide not THC. Who knows maybe if processed properly weed can help cure cancer and aids... it helps everything else why not give it a shot.

Lisa - It helps me a lot I had spinal cord surgery to remove tumors off my spine- I have ten more tumors in and out of my spine. Surgeries to remove them are dangerous and only be done when critical doctor took me off of pain meds. Afraid when I decline nothing will work, then pain meds have messed up my stomach so weed helps a lot with stomach and chronic pain

Curran - In California you just pay a doctor hundred bucks and they give you a green card - it's real simple here

Derek - Definitely helps with pain and muscle spasm. I am not sure but maybe have shrink in tumors.

Kivalina - I know someone who swears it keeps the tumors from growing.

Cindi - My daughter has NF and uses--she said it helps with the pain of NF

Ayanna - If I knew it would help my NF I would get a card and take it in medical form like candies.

Suzie - I used to smoke quite a bit and then stopped when I moved to a new country and didn't have a source. This coincided with the time that all my tumors grew on my back and chest, when I turned 30. I was symptom-less until then (apart from cafe au laits) and was only diagnosed at that point - suggests to me it may help defeat tumor growth.

Thank You all for your responses...

Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

I'm Rubber...You're Glue!

"I hate school Mom, PLEASE don't send me back there!" This was the text I got from my daughter this morning. It's the second week of school and already the vultures are decending on my 8th grader.

My daughter has always been socially akward. She doesn't fit in it and oftentimes can be found sitting alone. She is quiet and shy and has a hard time initiating any type of conversations.

The complaints I get from my daughter, have been the same since Kindergarden. "No one likes me." "No one wants to hang out with me." "They call me ugly." "The girls whisper and make fun of me behind my back."

This is all too familiar to me. I had a horrible experience in 8th grade. Being the new kid didn't help. I was always "different" than my peers. Chubby, with glasses, I was a prime target for endless teasing.

Until one day, I chose to stand up for myself. I was done with the rocks being thrown at me. I was done with the fat comments. I was done being the subject of many jokes.

I remember that day. Hot faced....I felt the power and courage fill within me. I whipped around, took my glasses off and asked this boy why I was so important to him, that he had to go out of his way to make me feel like crap.

He really had no responce, but I told him to grow up, and that one day he would be bald and fat, and may end up being on the receiving end of some cruel jokes. I told him to spend his time on something else, because I wasn't going to let him affect me anymore.

Eventually he did stop, and I had a pretty good year from then on. But did I really let go of him affecting me? To this day, I can remember how I felt...I relive the power this kid had over me over and over...so much for letting go, eh?

Even now, I find myself wishing... "If only I could have flawless skin and be thin...maybe people would like me." "If only I could have enough money..." "If only I could have a better personality." If only....

The teasing and bullying never really stopped for me....because I still let it affect me. I let what other people think of me, control my attitude and even what I stand for sometimes. I find myself trying to live up to the standards that other people set.

As for Bailey, all I can do is love and support her. She has the strength to overcome this. I am trying to teach her (and my other kids) that they are beautiful and strong people.

When kids bully and tease, I want my kids to know that THEY aren't the problem. It's not their fault. Some kids just need to feel in control...they like the power they get from picking on someone. They think it makes them inportant...or popular. Sometimes kids do this, maybe because it's the way they are being treated at home.

WAYS TO HELP
*Create a buddy system (strength in numbers)
*Really listen to your child, let them vent
*Contact the school

I know that my daughter is in pain. It hurts me, that she is hurting. But as her parent, I have to help push her fwd, and continue to encourage her. (even though what I want to do, is pull her out of school and protect her)

Sweet Bailey, those that matter, know how precious you are. Those that matter love you and support you. Those that matter will be by your side.

Life with Pain....

As long as I can remember, I have had pain. I remember one time when I was 8 yrs old. I was in 3rd grade and fell out of my chair. The children were laughing at me, and I couldn't get up off the floor.

The room was spinning and I felt sick to my stomach.

I remember looking up at the ceiling, feeling like I was on a boat. The rocking and swaying confused me, because I knew everyone around me was standing still. The teacher grabbed my arm and pulled me to my chair.

I layed my head down on my desk and shut my eyes. This was the first time I had ever experienced something like this and it scared me. The dizziness finally stopped and I was able to join my friends who were playing outside.

Episodes like this were few and far between, but when they would happen, they would send me to the floor, grabbing my head. Phone calls to home, from the school, went ignored. My mother didn't have time for another sick child.

Mom worked hard. A single woman, who was not only dealing with Mike, who had NF, but she was also dealing with her own deteriorating health and she didn't have time for more issues.

I stayed quiet for the most part. I was not diagnosed with Neurofibromatosis (yet) As far as my mom was concerned, I didn't have it, so she didn't have to worry. Even tho the doctor who had diagnosed my brother, also examined me, and the cafe au laits spots were noted, my parents were never told I also had NF.

My symptoms remained hidden. I was fearful to talk about anything I was feeling, because I never wanted to take away from Mike. He was the one who was sick. Plus what he was experiencing was scary to me, and I never wanted to end up like that.

When I became a teenager, the headaches and "episodes" got more frequent. I remember going into my sep-mothers medicine cabinet, looking for anything that said it was for pain. Luckily the only thing I ended up with was Advil.

I hid for years with my pain. Emotionally, Physically, Spiritually. I remember visiting the doctor two times as a teenager. (once for a wart, once for a girl scout physical)

I never talked about my pain to others, because I knew what it would bring....

It was not until my own diagnoses with Neurofibromatosis, that I would finally feel comfortable with expressing what so many others who also had NF were experiencing. It was almost as if this rush of freedom came over me.

I am finally free to express that I do in fact have pain. That it does not make me weak to talk about it.

Maybe if I had been diagnosed as a toddler, my life would be different. The endless suffering would have been "fixed". One can never know.

But here I am. A almost 36 yr old woman, living with Neurofibromatosis. I hurt on a daily basis. I am not ashamed or afraid anymore.

Thrive On!

Surgery Update

The post-surgical pain is easing, one week after surgery. It's hard to believe that a week has already passed.

I still feel shooting pain through my finger. I'm not sure if this is normal, but it kind of worries me, because THIS was what I was dealing with before the surgery. The gauze is stuck down on my nail bed, but finger definitely is healing up.

I'm still having pain in my right pinky finger and left foot. It frustrates that the MRI didn't pick up the tumors ... but maybe after we move, I can find a DR. who will take me and the NF on, and we can figure out why I am having so much pain.

I had to take a percocet today....not for the surgical pain, but for my headache. I was scared to take it because part of me felt it was a failure on my part, not being able to deal with the pain. I know I have to get over my fears, and accept the reality of taking medication to treat my symptoms, but it's hard.

I watched my mother struggle with addiction to pain medication, and I saw it transform her from someone who was talkative and playful, to a lifeless, and tired body on the couch.

I am very cautious about what kind of medication I put into my body, but I also need to learn, that sometimes it's okay to take something to relieve the pain.