It was like a felt a flip switch on Monday, June 23...They've quit working, the epidural and injections from May 17.
But, maybe not. I'll rest a bit and then rebound. In May, Doc said that I can't receive any more injections until August. I have to be able to make it until mid-August.
My limbs became heavier and weaker and more painful as July approached. Hubby, as in times past, was having to help me dress and undress. But, still, I had to bathe and dress and eat and walk and drive and work and think as clearly as I was able.
When it takes so much effort to simply be, when bathing and dressing become feats to conquer, life becomes overwhelmingly complicated. The goal is to get through the next ten minutes, the next hour, the next day. I rest a lot at those times, but the rest does not rejuvenate. It helps, yes...but the energy does not rebound.
I have noticed, when I am fatigued and health-challenged (to put it mildly), my confidence wanes. Just push through and do one more thing; give it all you've got. But, to push through with more stamina is an impossibility. All the will power on earth cannot strengthen the ability of my physical nervous system to supply its strength to my limbs so they can properly function. It's like asking a blind person to will themselves to physically see.
It cannot be done.
I am still learning to accept that and to not go the extra mile...at least for now.
There have been years upon years, when I suffered through asthma and pain and fatigue in the past, that I would watch television commercials - commercials depicting healthy people doing normal things...like walking or running or jumping or eating various foods or camping and other 'ors.' I would feel surreal at those times, knowing I lacked the ability to engage in those life activities but feeling that I must try. I must not give up.
Again, I have experienced this same odd feeling - an observer of doing instead of being the doer. It's almost like watching a fantasy. It's not a "negative" feeling. It's simply odd, detached. I can only imagine how a paralyzed person feels when observing a similar fantasy.
I ended up receiving another epidural in my lumbar and 7 shots in my neck on July 7, even though I wasn't supposed to be able to get them. Hopefully my insurance will cover the costs. July 8, was a full day of nausea and migraine. By Jul 14, I awoke feeling rested, finally. The relief was heavenly. I'm bicycling again and will start back on my water exercises today.
So what now...between now and the next 6 weeks? I'll know more in 6 weeks. In the meantime, I'm on a higher dose of daily medication.
Medical Marijuana is now legal in North Carolina for use in seizure patients. It is a start. The program isn't available yet; logistics are still being worked out. Draft rules are supposed to be issued no later than October 1st.
Flipping switches causes sparks; enough sparks cause change.
I can spark.
***
Here's a link to get North Carolina House Bill 1161 on the North Carolina November, 2014, ballot: Help put medical marijuana on the ballot
Here's a link to NC House Bill 1161: NC HB 1161 (pdf)
From page 4 of the NC House Bill 1161:
...(7) "Debilitating medical condition" means any of the following:
13 a. Cancer, gliomas, glaucoma, positive status for human
14 immunodeficiency virus (HIV), acquired immune deficiency
15 syndrome (AIDS), hepatitis C, porphyria, amyotrophic lateral
16 sclerosis (Lou Gehrig's disease or ALS), Alzheimer's disease,
17 nail-patella syndrome, fibromyalgia, severe migraines, multiple
18 sclerosis, celiac disease, Crohn's disease, diabetes mellitus, dystonia,
19 gastrointestinal disorders, hypertension, incontinence, injury or
20 disease to the spinal cord, spinal column, or vertebra,
21 methicillin-resistant Staphylococcus aureus (MRSA), myelomalacia,
22 osteoporosis, pruritus, rheumatoid arthritis, sleep apnea, Tourette's
23 syndrome, or the treatment of such conditions.
24 b. A chronic or debilitating disease or medical condition or its treatment
25 that produces one or more of the following: cachexia or wasting
26 syndrome; severe pain; severe nausea; anorexia; seizures, including
27 those characteristic of epilepsy; or severe and persistent muscle
28 spasms, including those characteristic of multiple sclerosis (MS),
29 amyotrophic lateral sclerosis (Lou Gehrig's disease or ALS), or
30 Crohn's disease....
18 comments:
Carol...Why wait until the politicians decide whether or not to pass a bill that might help alleviate some of your symptoms? If I were you, I'd try it and find out if it helps and if it does...you have a platform to push for legalization of it. I know a lot of folks who use it for recreational and medical purposes though it's illegal to do so in our state which I strongly object to knowing how it became so initially. I also think we would have a lot less problems with it at our border. They repealed prohibition and should marijuana. If some states repealed it, it makes sense to repeal it in all the states, tax it, and monitor it like they do alcohol! Washington and Colorado is bragging about how much tax they have collected since it was legalized for all. We are all Americans and laws should be equal in all the states! Just liberated Grandma's opinion. :D
Hey...if there is a LG movement, I'll sign the line! ;D (Liberated Grandma Movement)
Yes, I've been reading and looking into what I can do from my angle. Still collecting information. We'll see what comes down the pipe. (pun! haha)
Thank you Anna!!
<3
(((hugs)))
Did I mention smewhere down out here in webworld that I once asked by therapist for a script to try it? He said No! (Pill form.) I asked why not? He said he was afraid I'd end up paranoid or think I could take on the world and jump of a bridge thinking I could fly. I am sensitive to drugs but I wondered if his response might be in line with his own drug usage in days of yore.
I could never inhale it. Maybe some brownies?
A neurosurgeon wrote me a script for it over 30 years ago to help me rest because I wasn't ready to have a neck disk replaced. He told me he could prescribe it but not tell me where to get it. I found a way and it worked until I relented and let him do the surgery which was a success. My friends cook it with coconut oil and add chocolate to make very tasty "medicine."...they say. :)
I still think my paraplegic friend who has made great strides in her recovery using it's vapor pipe is the way to go. It's effects are quick and she doesn't get the bad residue in it and neither does it smell up the room.
I learned about Marinol for the first time a couple weeks ago. Until then, I had no idea there were pharmaceuticals already out there based on marijuana. I was told (base on a patient's experience) that Marinol mainly wiped him out. It has a high THC content...from my understanding.
I just googled it and found there are 10 pharmaceuticals based on mj. It looks like only 2 are approved. Interesting.
http://medicalmarijuana.procon.org/view.resource.php?resourceID=000883
I'll be back later (over the weekend sometime) and share a few tidbits that I've learned in the past few weeks.
<3
PS: Thanks for the hugs Zoe. (((backatcha))) <3
That's what I've read and heard Anna. *thumbsup*
PPS: Anna...yay that the surgery was a success!!
Regarding medical marijuana and the "high" effect...From my bit of research, the kind of mmj that might possibly help me the most is higher in cannabinoid (CBD) content than THC content. From my understanding, when folks in the research field refer to medical mj, they are generally referring to the CBD-higher-content strains of mj. There is really no high effect at all with those strains. That said, I've read and heard that some THC in the mmj is still preferrable (even though you wouldn't get a high from it) because of how the whole plant works together with receptors in our bodies.
Probably the most efficient way to get it is via CBD oil.
I imagine over time and as the laws change, the CBD varities will be more accessible. From what I've read, it is still illegal to purchase (without a mmj approved doc's script) in states where mj or mmj is not yet legal.
It's been interesting reading up on the different strains of mj. From my understanding the mj strain that best addresses seizures and nerve disorders and inflammation (due to its CBD to THC ratio) is known as Charlotte's Web. I always liked that book..."Charlotte's Web." :-)
I just read about the origins of "Charlotte's Web." It was called the "hippie's disappointment." *chuckle*
A quote from the interview: "...When we first started, it wasn't about making money, because nobody would buy CBD. They call it the “hippie's disappointment” — you could smoke it all day and you wouldn't get high. ..."
http://america.aljazeera.com/watch/shows/techknow/blog/2014/3/4/the-chemical-brotherscoloradofamilymakesgoodinmedicalpotbusiness.html
Who needs to do research with you and Anna around? ;-)
Chocolate, coconut oil (Zoe jots it down on a recipe card) . . . *grin*
Can you add almonds to mine? ;)
Umm okay but they are all yours. I avoid them. Sensitivities. I do have an epi-pen though should we have problems with ANY of the ingredients. ;-)
((((Hugs)))) Love you Carol!!!
I'm glad you have had some good days. Hoping you experience more of them in the future.
(((hugs bachatcha)))
Thanks April! Hope shared with and for you too. <3 <3
:-)
Life is just like that – full of ups and downs. One moment you might feel like you’re at the top of the world, and before you know it, you’re at the lowest point in your life. But whatever happens, it’s important to always stay positive and hopeful. As of now, there are 18 states that have already legalized the use of marijuana for medical purposes. Slowly but surely, we are moving towards a new direction. And that’s something to look forward to in the future!
Brad Benson @ Canna MedBox
Thanks for stopping by Brad. I perused the CannaMedBox site. Thanks for the link.
Yes, eventually it seems that all the states will get on board. I know eyes are closely watching Colorado where legalization seems to be having a win-win all around.
According to a NC neurologist I know who works in pediatric epilepsy research at Wake Forest and who will be licensed to dispense once things are properly set up in NC...the way the new NC law is worded makes the law ineffective. According to that neurologist, the law was rewritten from its original draft. The rewritten was changed to include the word "study," to limit the facilities that can prescribe (limited to Wake Forest, Duke, Chapel Hill), and to limit mj use to the CBD oil only. Because it is written as a "study" more restrictions apply and funds are needed...but no funds are allocated by the state for a study, and the state doesn't have the funds to give in the first place.
I spoke with the aforementioned neurologist a couple weeks ago and haven't researched that part of the NC law yet, so I don't know what is being done about it. Hopefully the wording will be changed so that the doctors approved to prescribe/dispense can do so for broader applications. The neurologist I know who is involved wants to also be able to prescribe more than just the CBD oil.
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