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.

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."

Author unknown

Celebration of Life

Last month, I had the privilege of being invited to a special celebration service to honor the mother of a friend. Her mother lived to be 102 1/2 years old and lived life to its fullest. This celebration service was a great reminder of what is important in life and a very moving experience. The theme was "Living the Dash" based on the poem by Linda Ellis titled "The Dash." It is not allowed to copy the poem here, so please see the poem at http://lindaellis.net/the-dash/the-dash-poem-by-linda-ellis/.

I will post other wonderful readings from that celebration and will name the posts the same as this one to indicate what they are. I was so moved by everything at the service that I have to share here so we can all be reminded that we all need to live a full and meaningful life, no matter what the size of our dash ends up being.

Through the Eyes of a Child

I know a lot of people worry about telling their children about MS once they are diagnosed. Common thoughts of "how much will they understand?" "will they be scared?" "can they handle it?" and other frightening things run through their minds. I remember when I went through that. My kids were 9 and 7. My husband and I sat down with them and told them we had to discuss something important. Very serious family meeting if you can imagine. I took a deep breath and told them the doctor said I have a disease called multiple sclerosis, MS for short. I explained that it affects many parts of the body and I could have trouble walking and one day be in a wheelchair. They sat there looking at me with equally serious looks on their faces. When I was done with everything I knew that I thought they should know, my older son asked "are you going to die?" I calmly said "not from this, no" and got ready to explain that everyone dies but that this disease could do a lot of things but wouldn't actually kill me. However, I didn't get the chance...all he said after hearing "not from this, no" was "oh, okay" and he walked away to play, coaxing his younger brother along with him.
     So that was my first slap to reality. He's right. If it isn't going to mean I'll die from it, then it can't be that bad, right? As they say...from the mouths of babes.

Handicapped vs. Crippled

Before the days of political correctness, physically handicapped people were referred to as cripples. As we became more PC, most people stopped using the term, understanding that it was offensive. However, there are still some people who insensitively use terms like “crip tick,” “crippled tag,” or other similar offensive nicknames for the handicapped placard for parking. It is possible that these people really don’t understand why this is offensive, so let me take a minute to explain.

            Even though the dictionary might say that cripple refers to not having the use of limbs, it has a much deeper connotation to it. When someone is crippled, they are completely incapacitated. When a trauma or situation is crippling, it leaves you incapable of doing anything at all. So, to call someone who is handicapped a “cripple,” you are basically saying that they can’t do anything at all. We all know that this is the furthest thing from the truth. Just look at the one-armed pitcher, the man who uses his feet to control his computer to do his high-level engineering, and other amazing individuals.

            I feel that this is the type of thinking that keeps people from getting the placard, bars for the bathroom, a cane, or other assistive devices. I know it took me a long time to admit that I needed these things to be able to live my life as I want. What I learned though is that admitting that I have a handicap is actually empowering. Since I think of the word “crippled” as meaning completely incapacitated, I would not consider myself crippled unless I was in a coma. Handicapped, however, just means that I need a little help with certain things. If I park closer to the door, it’s easier for me to get around inside; if I use the bar in the shower, I feel more secure and won’t be risking a fall when I feel dizzy from closing my eyes; and if I use my cane, there is less chance of tripping over the invisible hazards on the sidewalk. Without all those risks, I can get on with my life. So, my advice to people is to not let MS cripple you—take charge, become empowered, and make use of any handicap accommodations you need to live a normal, fulfilling life.

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.

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.

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!

Y2K...my 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.