I MOVED

Realizing I have a lot more to say about many topics, not just MS, I decided to start a new blog.

I imported all of this content there, so you can see it here or see it there.

Please visit me at Debby's World.

Boy I've been a lazy blogger! I am going to chalk it up to the winter...yeah...that sounds good.
I haven't had much to write about. It's been the same old MS for me so nothing new. I guess that's good. I'll try to do better with this. I found something else need to play with, so if you really miss me, see http://www.mymsteam.com/users/DebbyFestaNowicki.

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.

New doctor, old problem

The most frustrating this in dealing with MS is going to primary care doctors. For a while, I had a good one and was happy as can be; I never wanted to go to a different  doctor. Unfortunately, he left the practice group I go to and went too far for me...so here I go again, breaking in a new guy.
     I was feeling run-down and a little congested, so I figured I should go and see if there was something the doc could give me. My shoulder was also hurting for a few weeks, so I figured I should ask if it could be related, you know, a cold or something settling in my shoulder/arm muscle. Silly me...I shouldn't even have mentioned it.
     He went through all the silly questions that cannot be answered by an MS patient without a certain degree of uncertainty..."do you feel numb or tingling in your arm or fingers?"--UMMMMM yeah...all the time...I have MS. "Does it come and go or is it always numb?"--Yes. LOL...and similar things that he doesn't understand is completely irrelevant and will not help him figure out what is wrong. Sigh...I know I have to do it, but this guy better last a while, I hate doing this all the time. Maybe when I get the medical marijuana, I'll get stoned before I see him and see what he thinks then. That will be fun.

Calling in Tired

I wake up but not all of me. My mind is awake but my body remains in dreamland and won't respond to my wishes. I am aware of the alarm and force my hand to press snooze. The next time it goes on, my body joins me in the real world just enough to shut it off and then my head drops back to the pillow. My mind is threatening to join my body, but I have enough control to at least to think about taking a shower and getting my medication. I tell my body it is time for work and it must move and get up. I give it a little while to see how much can be accomplished. I am able to roll over, check the time, and grab my phone. I set the alarm for another few minutes of rest. The alarm goes off and my body still refuses to budge. It is now down to the wire...either I get up or I don't work. With all my strength, I am able to sit halfway up, but my body is so strong in its refusal to cooperate that I fall back down and my mind starts its way into dreamland. With my last drop of effort, I dial my boss's number and tell her I don't feel well. I don't remember if I hear the click of her hanging up before all of me slips all the way down into that other world of sleep. The next time I wake up, the day is more than half over, and I barely remember if I called in or not. I check my phone...no message from work, so I guess I did. I get up, drink some water, eat something, turn on the TV, and drop down again until nighttime. Then it's time for dinner, meds, and bed to start the cycle again and hope for a better go of it tomorrow.

Just Jim--raising a unique child

I often find myself talking to people about how difficult it is to raise a child who is very smart and/or creative. These children are just a little different than other kids and many times don’t “fit in” with others. Let’s face it, parenting in general is hard, it is a full-time job. When the child doesn't fit into the mold of what everyone thinks of as “normal,” it is just that much harder. Many people in the child’s life, like teachers, administrators, etc., want to label the problems the child is having...or more accurately, the problems they are having with the child...as some psychological disorder or syndrome. ADD, ADHD, autism, Asberger’s, antisocial, oppositional defiance. That last one is my favorite...it just sounds like they are calling the kid a brat, which he may be. Do you need a diagnosis to see a kid is a brat?

In my opinion, too many parents take the word of the first person that puts a label on their child that makes sense to them. But if they heard other opinions, those might make sense too. To diagnose a child too young and start treatments too early that are only for that one possibility is, again just in my humble opinion, a mistake. I think it is important to get several opinions, treat the symptoms while keeping open other possibilities, and wait to see how things progress as the child grows and learns which behaviors are acceptable and which aren't. I also think medication is very rarely needed in a child. I would go so far to say that I think no more than 5% of children that are diagnosed with one of these psychological disorders or syndromes actually have it. Pablo Picasso exhibited signs of autism or at least Asbergers syndrome when he was a small child. What would treating him for it have done...maybe nothing bad, maybe something good...but would you want to take that chance? Why do so many parents search for a reason their child isn’t “normal”?  Why can’t it just be that the child is not like everyone else because he is just unique?

While I am by no means any kind of expert or even possess any kind of schooling for these opinions of mine, I do speak from my own isolated experience, so let me tell you about my son. When he was little, just starting to talk, he expressed disapproval with people changing the way they say his name by saying “No. Just Jim” (you know how people play around and say things like Jimbo, Jiminy, etc. to kid around). Now that he is a man in college, I wonder if that statement showed an insight into his own personality. From very early in his public school education, my husband and I would get called to school several times a year. There were meetings, behavioral modification plans, suspensions, and requests for counseling. I had many discussions, consultations, and even arguments with several teachers, administrators, school counselors, psychologists, and psychiatrists. Each time I allowed testing but no diagnosis or medication. Everything had to go through me if they wanted any kind of treatment. Year after year, some behaviors would improve and others would emerge. Even my husband and I wondered sometimes if there wasn't a disorder there somewhere, but we kept to our guns and just dealt with each problem as it came up. Of course, being the age of Columbine and other school shootings, we had to deal with the “no tolerance” policies and the knee-jerk reactions to what used to be considered “boys will be boys” behavior. So, he had to learn that he couldn't just say things in this day and age, and we had to deal with taking him to several doctors and even drug tests. We heard all the possibilities of all the things I listed above that could be causing the behavior, and we continued to raise him as if it was the 1970s and boys will be boys and teaching him appropriate behaviors. Well, after 12 years of all this and getting to know my son better than any teacher or school administrator ever will, and after several years of counseling mostly to satisfy the schools, we got the final word from a board certified psychiatrist. He has no disorder and never did. He has no syndrome and never did. He doesn't care for society’s rules and thinks he knows better than at least 99% of the people around him. Diagnosis: it’s just his personality. He is a wonderful person; very empathetic; very, very intelligent; creative; and sometimes in his own world. In short, he is, always was, and probably always will be...Just Jim.

Fatigue or Depression?

Fatigue is a sign of depression. Depression is a symptom of MS. Fatigue is a symptom of MS. Soooooo, how do I know if I'm tired because of my MS or because of depression? I suffer from both at various times and to various degrees, but are they related? Is it a cause and effect? I decided it doesn't matter. I will keep taking the antidepressants and keep treating fatigue the best I can, no matter why I'm tired. I drink energy tea, I take naps in the afternoon, and if it that doesn't help enough by late afternoon, I eat peanut butter or a granola bar or other such energy enhancing foods. Of course, none of this can help if I'm too tired to get up in the first place, which is often the main problem. But most days I can drag myself out of bed and get going pretty well to make it through the day. On days when I can't, I call in tired...I mean sick. But that is a topic for another day.

Days In=Days Out

I believe I have said in other blogs that I am blessed with the ability to work at home full time. It's days like the recent weekend I had that makes me truly appreciate it. I had to go into work for three days. Luckily, the third day was only a half day.
     The first day was okay, no big deal really. I did forget my tea and Advil, but someone gave me some Advil and I drank coffee. I got home and rested well for the next day. Day two I remembered the tea, forgot the Advil. I didn't need it so no harm no foul. However, after two days with no nap, I started to feel it. I had a bit of trouble walking right, even with the cane. And after lunch with no nap, I was about to drop. I started crashing. I made it though, even if I did start to lose control of emotions slightly. I made it through the day and slept well. The third day (Thursday) I guess was too much. I had a hard time getting up. Remembered everything, but was dragging. I barely made it through the half day, and when I got home after lunch, I crashed...and I slept, slept, slept. I woke up late with a headache that didn't go away until today (Sunday). I had to call in sick on Friday and am just now starting to feel okay.
     I guess the lesson is that I need to prepare for the days after going in...as many as I go in, I may need to account for in recovery.
     Oh well, such is the life with MS. Again, I am just glad I am still working while I need to.

Celebration of Life: Your Angel's Name

Once upon a time there was a child ready to be born. So one day he asked God: "They tell me you are sending me to Earth tomorrow but how am I going to live there being so small an helpless?"
     God replied, "Among the many angels, I chose one for you. She will be waiting for you and will take care of you."
     "But tell me, here in Heaven, I don't do anything else but sing and smile, that's enough for me to be happy."
     "Your angel will sing for you and will also smile for you every day. And you will feel your angel's love and be happy."
     "And how am I going to be able to understand when people talk to me if I don't know the language that men talk?"
     "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
     "And what am I going to do when I want to talk to you?"
     "Your angel will place your hands together and will teach you how to pray."
     "I've heard that on Earth there are bad men. Who will protect me?"
     "Your angel will defend you even if it means risking its life."
     "But I will always be sad because I will not see you anymore."
     "Your angel will always talk to you about me and will teach you the way for you to come back to me, even though I will always be next to you."
     At that moment there was much peace in Heaven, but voices from Earth could already be heard, and the child in a hurry asked softly: "Oh God, if I am about to leave now, please tell me my angel's name."
     "Your angel's name is of no importance, you will call your angel Mommy."

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