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.