christmas

Art Therapy

I keep hearing about art therapy and was going to try a class or something, but my schedule just didn't let me. So, I decided to do my own art therapy. I had the idea that I would paint something that represented MS to me. Now, keep in mind that I don't paint normally. My son was always the painter in the family, even though he hasn't really painted in years; he's into writing now. I decided I would take out his easel and paints and stuff he wasn't using (including blank canvases that just happened to be lying around) and just give it a whirl. I painted a brain and spinal cord and was going to put different things on them to indicate MS. I messed up the first try and did another one. However, I looked back on the first one and thought it looked like a MesS...just the thing, right? I went back to that and decided it would become the representation of the disease that was inside me before I knew anything about it.

 Then the second one would be more structured, more detailed. It would represent my understanding of MS now. That one I would metaphorically treat...I took different colored crayons and colored over the different aspects, each color representing a different medication or treatment. By this time I was having a blast.

HIDDEN

After all that was done, I painted myself over these images...myself from an old photo from before my diagnosis over the messy, misunderstood painting (I named that one HIDDEN), and myself now over the organized, treated painting (I named it CONTROLLED). I am very proud of myself for how they turned out. Again, I'm no painter, but this was a lot of fun and very fulfilling.

CONTROLLED

To Work or Not to Work...

     ...that is the question...sometimes.

The more times I need to call in tired, the more times I feel sick or have headaches, and the more summer days knock me down, the more I wonder how much longer I can continue to work full time. I'm not mentally at the point of investigating permanent or partial disability because knowing I will be giving up part of my income makes me uneasy. After all, I have become accustomed to a certain lifestyle. You know, the little things in life that are hard to give up...things like a consistent roof over my head, regular meals...you know little things like that.

Only in America

Americans enjoy many benefits that are not so available in some other countries. We are entitled to freedoms that are not so available in some other countries. However, most of us forget that besides being a free, democratic country, the United States is a capitalist country, and that is sometimes what takes precedent in the execution of the benefit. For instance, under the Americans with Disabilities Act (ADA) people with MS have the right to request and receive reasonable accommodations to help them perform their job functions. To receive these accommodations, the employee must document the fact that he or she has a condition that falls under the purview of the ADA and then detail the accommodation needed; the forms must be filled out by the employee and the employee's doctor, complete with amount of time it will be needed.

This can sometimes cause mental anguish for the employee. After all, it is sometimes difficult to admit to ourselves that we need help, never mind putting it in writing and discussing it with the doctor so he can detail everything. Once this is all done, you have to hand it over to the human resource department, so several people now know that you are not as capable as you used to be without extra assistance. That done, you would think that, since MS is an incurable disease, it is understood that this process doesn't have to be repeated because your doctor stated clearly that this is a lifetime condition.

Sorry, no. The ADA affords companies the right to ask for a yearly update/renewal of all the paperwork, including the doctor's statements and your requests before they will continue to provide the accommodation for you. So, if you are in need of anything that requires paperwork or any other steps, be ready to do everything more than once throughout the year. I am letting everyone know this because I realize that while all Americans know that we have the right to life, liberty, and the pursuit of happiness. However, not everyone is aware that that pursuit can be littered with hoops to jump through and hurdles to clear.

Back in the Saddle

So I felt well enough after my little bicycle mishap to get back out there. I was all set, I had a plan, and I was going to pay attention this time when my legs felt like they had enough. I went around one block, uphill, and then down and over to the next. I felt good. I went up that block and felt good enough to finish out to the next on before going back toward my street. I was so proud of myself. I was doing really well. YEAH! Right! A little over halfway up that block, I slowed down to a snail's pace, barely enough to keep the bike up. I could swear I was going up a huge mountain, but of course there aren't any in my neighborhood. No, this was the regular street that goes slightly uphill. Hmmm. Well, I made it. Barely. I really thought I was going to have to stop. I made it to my street where it went downhill again. I was so tired and my legs were so beat you would think I had been biking for hours. Nope. 20 minutes. Apparently that is my limit. I keep wondering when I'll be able to do more; when I'll be able to handle the uphill better. But, you know what? It's okay. If 20 minutes is my limit, then I will do 20 minutes whenever I feel I can go out there. Can't do it if it's too hot out or when I'm having a particularly bad MS day, but so what. I am doing what I can and hopefully my body is benefiting from what little I can do for it. It's all I can do, and I won't stress about it.

Canabis 101

Here's what you can't get from you local street merchant. The scientific information on what it is in marijuana that can help with various symptoms, what types of marijuana are grown for what purposes, and the exact content of what you purchase.

Studies have shown that there are 70 different chemicals in cannabis, called cannabinoids, each having their own unique effect on the body through the nervous system. The two main cannabinoids that are responsible for the effects and  benefits are THC and CBD.

THC--the most well-know chemical in marijuana and the main chemical most people are obsessed with one way or another. This is the chemical that gets you high, so of course this is the only thing most people focus on when they talk about medical marijuana. "Is it really strong?" "You'll be high all day." And other such things are constantly being thrown at me by people who know I am interested. Being high isn't the only thing THC will do for you though. THC helps with stress, pain, and inflammation.

CBD also has anti-inflammatory properties as well as anti-anxiety, anti-nausea, neuroprotective, lowering of blood pressure, and painkilling properties. It works well against convulsions and muscle spasms, and as a great sleep aid. Recent studies have shown success in the treatment of seizures.

Medical marijuana is grown in different categories for different purposes, based on the chemical content. The three main categories are Sativa, Indica, and Hybrid. Sativa is high in THC and low in CBD, and Indica is low in THC and high in CBD. Obviously, hybrid is a mix of both. They have various strands cultivated in various ways, and they tell you the percentage of the chemicals.

New Jersey is not allowing the dispensaries to sell the other forms (pill, lollipops, etc.). I personally find this ludicrous. I mean, people needing it don't have enough problems that they have to force them to smoke the stuff? Well, that's for another post I guess. They are allowed to sell sealed containers of 1/4, 1/2, or 1 oz., on which they put the patient's name and ID number from the official NJ Medical Marijuana program. The ID must be in the users possession while transporting it, and it must be in the original container with that number on it. Patients cannot go outside of NJ with it.

So...after my brief education on these things and hearing that the stuff costs $535 an ounce (ouch!), I decided on 1/4 oz. of something to relieve anxiety and help me sleep.That seemed the best way to start for now. I got what they name "Death Star." I don't know who comes up with the names, but this is not helping our plight to get people to take this seriously as a serious medicine...but I digress. Death Star is 30.58% THC (that's VERY high) and 0.74% CBD (also somewhat high). The effects are relaxing, calming muscle spasms, and providing relief from nerve and muscle pain. They told me it should help me sleep.

After coughing up a lung (okay, maybe that's an exaggeration) with a joint, I tried a pipe. A little better but still harsh. I think it is helping with sleep, but I am still logging and keeping track to make this a real experiment so I can relay the true findings after a while, so I will hold off on blogging the specifics until I am satisfied I have done things true to my science-needy mind. I will say though, I went out and bought a vaporizer (like an e-sig) to save my lungs, so I will be using that for a while. Sorry that I can't provide the joint and pipe findings for everyone, but I like my lungs.

As always...stay tuned...

Listen to Your Body

I was very proud of myself today. I rode my bike further, almost double the distance. Then my body started complaining a little. I was back in front of my house and I could feel that my legs were tired and I was getting thirsty. I decided I could go a little bit more and then stop. Stupid ass that I am, I wasn't listening to my body telling me to stop right then. I told my left leg that the weakness it feels in trying to be the starting peddler indicates that it needs to do just that and then we can go home. Like I said...Stupid Ass. My left leg complied and was able to make it up the height to the pedal so it can start the bike on its way...well, the rest of my body was apparently helping by leaning the bike a little to the left, which I didn't exactly notice caused the handle bars to also lean to the left. So, naturally, the bike went left and I was unable to pull it back. Those of you who have similar balance issues as me will immediately understand...once balance is compromised, there is no getting it back with MS related issues. Down I went. I felt really stupid and hope that no one saw me. I got up, went home, and rested. I can hear my body saying "I told you so" repeatedly. My left thumb is now killing me...no doubt its way of screaming at me for allowing the bike to topple over on top of it. Sigh...hopefully I can ride again tomorrow. I will not ignore my body again.

Just Like Riding a Bike

Because my legs seem to be getting weaker, my doctor suggests excercise. So I wrode a bike today. I haven't been on a bike in over 15 years. It's true what they say...you never forget. You can, however, lose some sense of balance. I swerved a bit...okay, a lot. No big deal though. After a leg cramp, a seat adjustment, and lots of weird wobbling like a first timer, I made it around two blocks near my house. A total of 15-20 minutes. Felt pathetic, but I'm giving myself a break...baby steps. I will have to make a habit of it and get better. It felt good but I got tired. I will get better.

More than Street Value

So I got my approval; passed the backtround check. It cost $200 just to get the card saying I can purchase and carry the stuff. I dont know for sure yet, but from what I understand, it will cost more than it does on the street. Of course it's better, grown for special purposes.

My new pet peeve now is that health insurance won't cover it. I doubt I can even get reimbursed from my FSA, but I'll certainly try. I just don't understand why I can have all kinds of drugs that will make me high, dopey, you name it...steroids, uppers, downers, what have you...but I can't have a simple weed that God gave us to help with what ails us. It's ludicrous! I hope this changes soon. I mean what about people that can't afford it? How long will I be able to afford it?

New Jersey Rules

Like most people who are annoyed by marijuana laws, I am jealous of people who live in Colorado right now. However, since I have no intention of moving there any time soon, I have to live by the laws of the state I live in now…New Jersey. Some of you may be aware that New Jersey has some of the strictest medical marijuana laws of all the states that allow it, but unlike what I thought it would be, it isn’t a bad system. It actually makes sense to me…and that is saying a lot! The system is set up to make sure people don’t run amok with it. Centers need to get a license first of all. That makes sense. I mean, I don’t want just anyone to sell me the stuff…there are a lot of different blends and types that are for specific needs; I am glad that the people selling it know their stuff. Otherwise, it’s just pot…not really medical marijuana…there is a difference. The next regulation is that doctors need to sign up with the state’s regulation office, thereby making sure no one can forge prescriptions or whatever…I’m not sure why this is the case, but it doesn’t bother me. Patients that want to get it can view the list of doctors that are signed up to make sure their doctor is one that can give it to them. Next…patients must be seeing that doctor for a year before that doctor can sign them up. That makes sense on multiple levels really. Doctors would get overwhelmed with new patients if it were easier for them to give it out. After the year is up, the doctor puts the patient on the system and gives him/her a registration number. Finally, the patient registers and gives personal information so they can do a background check. Once that is done, he/she gets a card allowing the purchase of the marijuana and the center they registered with. So, that’s where I stand…registered and waiting to pass the background check. I am going to try it at night to help me sleep and I am going to monitor other benefits and affects as they happen. As always, stay tuned…

Meds Revisited

So, my experiment to go off most of my meds has shown its first sign that it isn’t

working. The first sign of it can be seen right here by looking at how long it’s been

since I’ve written anything and the topic of what I wrote. Yes, technically, winter is

over so I am finally coming out of the winter blues. However, I found that the tea and

vitamins were not enough to combat my MS fatigue. So now, before my work suffers

any more, I am going back on the anti-fatigue medicine Provigil. I don’t really like it,

but I need something while I am still working so there it is.

         Of course, Provigil always made me unable to sleep…so, hopefully before that gets

out of control next, I am going to try the medical marijuana to help me relax and

sleep at night. We’ll see how that goes in time…stay tuned.

Winter Blues

As the sky darkens, so does my mood. The clock says it's not much past noon yet I feel it must be close to midnight. The closer the storm, the further my energy goes and the closer I get to deep slumber. Snow they say, but it surely won't be a bright happy snow or else I would no doubt be wide-eyed as a child in anticipation. No, this storm threatens to bury me deep inside myself until the thaw releases me from my chilly seclusion. Oh Mother Nature, I wish I could escape the shackles you keep tightened around my emotions.