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."

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.

Who Am I?

Everyone finds and defines self worth at different times and in different areas of life. Many times, a person's self worth changes ax they enter different phases of life. The hardest thing to do though is defining your self worth when a change came through no choice of your own. When the worth of a person is redefined for him or her, it may not be easy for that person to see what it is, but I assure you, it is there.

     After trying on different "hats," I found in my thirties that I was a career woman. I was very good at bringing technology into publishing and helping bridge the gap between editorial and tech people. I thrived on change, loved the work involved, and never minded thinking about work 24/7. Working vacations were okay, and I was able to fit family in without a problem. That's who I was, that was my contribution to the world. Even after the tumor and MS diagnosis, I was able to bounce back and deal with the symptoms without it affecting my work.

     Unfortunately, a career very often becomes very high pressured and stressful as it leads to more responsibilities—and we all know that stress and MS make for poor bedfellows. Eventually, and without my notice, cognitive MS symptoms started to appear. As the stress got more intense, I became less effective in my career. When I finally came to the point of being laid off from the job I had, I was a different person. I am blessed with a friend and mentor who saved me from being unemployed and even had a job open that would have saved my career entirely, that is it would have if I hadn’t become this other person of course.

     The new me was unable to convince the upper management that I was right for that job and therefore had to wait and settle for a much lower position that was to become just a job, my career a distant memory. Knowing I disappointed my friend, I tried to pick myself up and bring my old self into the new job, but that old me was too far out of my reach to be of much use or have the proper effect that was needed. So, saying goodbye for good to the old me, I tried my best in the job and started the search for what the new career was to be. I was still under the impression that the new me was just a new version of the old me. I thought my self worth was too tied to a career for there to be worth in not having one. It has taken me a number of years to fully mourn the career woman and accept that my job is no longer part of my importance to the world. It took a couple more years to get beyond the mourning and understand that I still have something to give to this world. I don’t pretend to understand fully what it is; I mean can anyone really understand the impact they have on others or on the universe? I just do what feels right and have begun to go back to things I have enjoyed in the past.

     Writing is something that has been part of me since I was very young, so I am hoping to touch people’s lives with it. I know now that its okay to transition into a different me without losing any of my true self. Whatever the past me or the current me has to offer, there has always been and always will be my core self that is worthy of nurturing to the fullest possibilities.

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.

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.

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.

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.

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.

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.

Welcome

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.