Sunday, July 21, 2013

Leaving them speechless

I learned early on that it can be difficult to tell people that I have MS. They don't know what to say. They want to give support or compassion; they don't even know which. It's almost like they feel they should give condolences. I sometimes feel really bad about that, but other times I just think it's funny. My first experience with this was early on, I had just been diagnosed and I had never used a cane before. So, naturally when I went to work with a cane, people I didn't know well thought I hurt myself. I got on the elevator with the big boss--president/CEO level. He asked what happened, did I hurt my leg, etc. Without thinking, I said "No, I have MS so it's hard to walk sometimes." Now, this guy was one of the nicest guys I ever met, so the look on his face made me want to swallow my words. He looked like I just told him someone died and he didn't know what to say. I think he said "I'm sorry" or something, I don't remember, but I do remember that I never wanted to make anyone that uncomfortable again. Now I try to ease into it by first saying that I have trouble walking sometimes. Thankfully, most people I have contact with already know. But if strangers ask, I just say whatever I feel like saying; I figure I'm never going to see them again, so what's the difference? I don't want to make strangers uncomfortable any more than anyone else, don't get me wrong, it's just that if I'm in the mood to shock someone or shut them up or silently laugh at the reaction, I can't spend the energy feeling bad about it. If that's bad, oh well, maybe I'll say 3 Hail Mary's after I do it from now on.

Monday, July 15, 2013

MS Enemy #1

Well, that may be too harsh. I don't know if it's enemy #1, but heat is up there on the list. Over the years I have been prompted to stay in the air conditioned house rather than go outside. I don't enjoy the beach at all any more. And given the choice during the summer, I will do nothing rather than deal with what the heat does to me. Lately however, I have wanted to do more things outside the house. Probably because I am now a full-time telecommuter and I just want to change my environment once in a while. But the heat is still a problem. Today for instance, all I did was go to Target for a couple of things. I wasn't outside for 2 minutes going in and out of the car and I felt like I ran a marathon. I am hoping it is just a temporary hot streak in the weather or maybe I was just overly sensitive today. I keep reading about the cooling aids that are out there for people with MS but I haven't tried any. I always thought they were for people who live in places like Arizona or Florida, not New Jersey. I may have to review that attitude and look into them after all. I refuse to become a hermit just because the summer is a hot one.

Friday, July 12, 2013

The Dumbass Decade

Everyone who has teenagers or deals with teenagers on a regular basis always complains how they think they know everything and how it is hard to talk to them. This has been the case since the dawn of time. 
“Our youth now love luxury. They have bad manners, contempt for authority; they show disrespect for their elders and love chatter in place of exercise; they no longer rise when elders enter the room; they contradict their parents, chatter before company; gobble up their food and tyrannize their teachers.”
 Sound familiar? That's a quote from Socrates. So, see, it's nothing new. I have found that this is a purely physiological process, and I read an article that showed me I was right in my theory that everyone goes through about 10 years of being...well...a dumbass. Some people enter it at different ages and some leave it at different ages (some never leave it), but it is around the ages of 14 - 25. Here is the biological explanation that I have found. It helps me deal with people of this age and allow them their 10 years. Of course, after age 25 I have no patience for more of this behavior, what can I say?
     Around the age of 14, puberty hits. Hormones are running wild, boys start to grow facial hair, girls start to develop breasts, and they notice each other in ways they never did before. By 16 or so many of  them look like adults, so of course they feel like they are. Here in America, they can drive by the time they are 17 (depending on the state they live in), they finish school by 18 (other countries by 17), and society tells them they are adults when they are out of high school. At 18, they are viewed as adults and treated as adults. The problem is, the human brain hasn't finished developing yet. The last part of  the brain to develop is the rational, decision-making piece--it develops around the age of 25! This is why I think the peak of the dumbass decade is around 19. At 19 the feeling of being an adult has settled in and now they think they are "all that" if you know what I mean. All kinds of decisions are being made during these years without the ability to make decisions...aka DUMBASS.
     Around 20, hopefully, they start to feel the consequences of this behavior. Let me take a moment to say I feel that parents need to allow them to feel the consequences on their own if they hope for this to fade into the realm of kid behavior and have them grow to responsible adults. That's why I told my kids they had to live at college at least for the first year--so I wouldn't see the stupid things they do and wouldn't be tempted to help them fix it. I told them to call me if they do something so stupid they end up in jail or the hospital, otherwise I don't want to know about it.
     So, at 21, here in America, they can legally drink alcohol (not they didn't do it illegally before, but now no one can say they can't), if they go to college, they finish around 22, and now they start to realize they have to do something with their life. Since they still can't make rational decisions, they still may do things that seem dumb, but hopefully not too bad because hopefully they have to deal with what they do on their own. So the decade starts winding down as the rational part of the brain starts to develop and in a few years they should be done with this behavior. If they aren't, I feel that now the rest of us can tell them they aren't allowed to act like dumbasses any more.

Body, Mind, and Soul

Yoga has taught me that everyone is more than just physical beings. We are all body, mind, and soul. MS may affect the mind, but really in a physical manner, so I feel only my body has the disease. I believe this strongly and would like to share that belief here by sharing my experiences, thoughts, and views from all aspects of my 48 years. Hopefully, you will begin to see the whole being and understand how I live with MS by incorporating its affects as just another part of life and not my whole life.

Thursday, July 11, 2013

The Why Me Slip

I realized that yesterday I was feeling lousy and just blogged stuff to try to make myself feel better. I slipped back into the "Why Me"s I guess. It happens. I can be all strong and okay with everything and once in a while I just get down. But, this blog is supposed to be my opportunity to impart my past 13 years experience with the disease, not just a place to go on about what I'm feeling now. I can't go back now though, so let's talk about why I decided to go on about my pursuit to get off meds to make myself feel better...I promise it has to do with the past.
     See, over the years I have found that no matter what type of symptom I have, there is a medicine for it. However, the medicines sometimes made me feel...well...not myself. Don't ask me who I felt like, I just know it wasn't me. Then, when I would mention that to the doctor, I would be given another medicine to counteract that feeling. That medicine would then have it's own issues and I would either get a modification of the dose or another medication. At some point, I was on daily doses of four different medications, the disease modifying medication (shots at that time), and two other medications to handle occasional problems. All I wanted was to go off everything and start all over again. Unfortunately, working full time, I was worried something would happen if I did that to affect my job, so I stayed on them.
     January 1 came this year without my usual meditative start of the year and I felt lost. So, I decided to go for it. Since experience has taught me that adding medicine wasn't going to work for me, I began to look for options. I had great experience in the past with Yoga, but I have been unable to get a class that fit in my schedule. Drawing on some of my Yoga teachings, I thought about different things and searched the internet and lo and behold I found an herbal tea company called Yogi Teas. They have blends for certain conditions and so I gave them a try. The first one I tried for energy worked great. Now I continue to try others. I figure that for many things that are made artificially, there is a corresponding herb or something that can do the same thing. Not for everything, but for most.
     Of course I brought the teas to my doctor to make sure the ingredients wouldn't interfere with anything I am still taking, including the new oral disease modification medication. I can't stress enough how important it is to run everything like this by a doctor to check the effects. Just because something is natural, it doesn't mean it can't do some harm.
     I see I digressed from my original point. I decided to go on about it yesterday because I was feeling down, right. Why would that post make me feel better? Because I needed to remind myself that I am doing something to get myself back. Get back to feeling like me and not whoever that other person is that I've been feeling inhabiting my body. I don't pretend to have the qualifications to give anyone advice, but I do hope that my experiences can make others look into their own situations and figure out what is best for them. So my pursuit rings a bell and makes others look at what they need to feel and what will make them feel their best, I guess I've done my job.

Wednesday, July 10, 2013

Meds, meds, meds

The beginning of this year I decided to try to get off some of the symptom medicines and try a more holistic approach. So far, so good. I replaced the medicine I had been taking for fatigue for herbal tea I found on the Web. That works so I am trying other teas that promise to help with other things. I don't know that everything can be taken care of this way, but I am just at a point where I was having a medicinal overload. I am going to try juicing and other holistic methods too. At my appointment yesterday, my neurologist asked if I want to try another medicine--one that helps with walking. I said no for now. I can still walk, maybe not fast and maybe not for long distances, but I don't care right now. Another medicine will defeat what I've achieved so far. So, I'll stay slow and keep the cane for now.

Monday, July 8, 2013

Looks Can Be Deceiving

"But you look so good." I'm sure many of you have heard that or something similar at some point. I find it amusing really. What does it mean? Is the speaker saying they don't believe you could have an incurable, debilitating disease? At my best, I figure it's one of those compliments that are meant well but sound backward, like "you look nice today." Jeeze, what do I look like every other day? On bad days, I want to scream "should I get my cane and hit you with it everywhere I'm feeling my symptoms so you have a better idea of what I'm feeling?" Don't worry, I don't actually say it.
     There is something caregivers and other people in the lives of MS patients should keep in mind. If we complained about every single thing that bothered us every day, they'd avoid talking to us. And what good would that be? Luckily, we understand that it is what it is and we have resources to help with these symptoms so we can get on with life. So we each do what we need to do to live how we need to live. So for all caregivers and others, remember this--just because I'm walking, it doesn't mean it doesn't hurt to do so or I'm not feeling uneasy about my balance...just because I was up early and seemed energized, it doesn't mean I slept last night or won't crash by 3:00...just because I am talking, having fun, joking around, it doesn't mean I won't burst into tears randomly...and the list goes on...
     MS is random, unpredictable, and yes, debilitating--but some of us who have it find the randomness and unpredictability amusing so we don't focus on the debilitating. That's why we look so good!

Tuesday, July 2, 2013 full story

In 2005 I sent my story to MS Focus and they published a shortened version of it. Here is the original: Original MuSings

Can't is a 4-letter word

Recently, someone asked me what I can't do because of MS. I answered with the basics; I can't walk long distances, I can't go up and down stairs, etc. However, after thinking about it, I realize that I should have said that in actuality, there is nothing I "can't" do.
     There are things that are difficult to do. Walking long distances is hard and I get tired and my legs hurt. But, I can rest along the way, I can take medication to alleviate the pain, and I can make sure I have my cane with me. If it's too much, I may feel really awful the next day. But why should that mean I "can't" do it?
     Life is full of choices. Suffering from MS is no different. All that is needed is an informed decision. There are many medications to alleviate MS symptoms. Some have side affects, so when I want to do something that I know could cause a flare up of symptoms or wipe me out for a day, I have to think about what I can take and what that would do and then weigh it all out to make the best decision.
     So, I can do anything...well, maybe I can't climb Mt. Everest...but I doubt I could have done that before the MS.

Monday, July 1, 2013


Hello. This is my first attempt at blogging, so bear with me. I am still getting used to the format and where I want everything. I hope I can get going quickly and make this a virtual support group for all those suffering with MS and their families, friends, and anyone else who wants to know more and possibly help with the struggle.