*Author's Note

I don't want to give the wrong impression--especially in light of my last post. So please allow me to clear some things up. First, I am not totally against myself, I just hate how this disease has manifested itself. I actually don't mind myself and spend much of my time alone and enjoy my own company--and no, that is not a euphemism for things that need batteries. Secondly, my marriage is suffering and my family was thinking way beyond me, about me dating again some day and I was revolting against that idea. It would take one heck of a person for me to even consider staying out till 9pm (my bedtime). I am still coming to terms with a disease that has not slowed down enough for me to get my breath and come to terms with it, and honestly, I am not sure I ever want to become complacent. Anger is a great motivator and spurs me on to challenge myself and do things I am "not supposed to do." And lastly, right after I was diagnosed and even to this day, I had a hard time finding information about MS that was not put with a positive spin. I wanted to know about the stuff no one wanted to talk about, depression, pain, disease progression (especially with those who also have a very aggressive disease), dealing with a world where everyone wants to be first and I would be thrilled with second, that kind of stuff. So my blog is about this stuff. The hardships of having MS and the junk nobody wants to talk about. Like the fact that I have been stuck so many times I feel like a pin cushion (and wanted to be one for Halloween), why are MRIs so loud when all I want is to sleep in there, why does it seem that people always fall into 2 extreme categories of either too helpful or stand back and watch the gimp struggle, when depression attacks or when good vision goes bad, and even the ever present wanting-to-hurt-myself, which I now realize I can't do to my family so don't worry about that. So I may sound extreme sometimes, but I am not as negative as I may come across (hate to blow my cover that way...). I just want to talk about what is swept under the rug and hear about whatever you want to talk about--I'm a good listener like that.

Sometimes I Wish It Was A Toomah

I have a lot of thoughts about MS that I am not willing to share with anyone except others with it. My family does not understand why I attempted suicide almost 2 years ago. They don't understand that I don't like myself--or more accurately myself with this disease. They cannot understand why I don't like walking in front of a lot of people or why I don't care to always do my makeup and hair. I don't like to do my makeup and hair too often because I liken it to putting makeup on a pig. I may look better but I feel like it does not go with what this disease has made me--a gimp. Would you put expensive upholstery on a beat up old car? That is how I feel about trying to look good. I get so tired of people telling me that it is not a death sentence, to which I always respond that it is a life sentence with no parole. Sometimes I wish it had been a tumor and it was a life or death thing. I hate this slow chipping away at me. I wish it were static, then I could mourn my loss and deal with something that is. But to have it always changing--and for the worse--makes it so hard to come to terms with. All the cliches in the world will not cheer me up or change my mind, and while I appreciate others trying to help me feel better about myself I wish I could get it through their heads that it is not about how others see me but how I see myself. Not only has this disease affected me physically, but it has wreaked havoc on my self-esteem. I have always been a kept-to-myself person but now it is even worse. I am a tough nut to crack and I don't think it is worth the effort to try and crack me. Whew! I just had to get this off my chest and say it only to those that I think can understand me.

Ye Old Virgin Lidwina

I have been tearing up my books about MS trying to find more info on trigeminal neuralgia, but all they have is a few sentences and then off to something more pertinent. (I have to say that anyone who is suffering from TN would find any info about it pertinent.) One of the most compelling things I have found so far is about what is considered the first documented case of MS--the Virgin Lidwina. For anyone who may not be as much of a history geek as me, I will give an overview: Late in the 14th century Lidwina fell on the ice while skating with friends (and is thus the patron saint of figure skaters), kicking off an ensuing 37 year disease of waxing and waning neurological problems. She suffered from the usual symptoms of MS and had terrible TN along with it. She embraced her suffering, thinking it was her lot to take on suffering for mankind. So what does all this have to do with me, my TN and how I view MS? First, I am not about to embrace suffering if I can help it; I know that I am not taking on suffering for mankind--I would be a terrible choice. I am not patient or self-sacrificing; and lastly I still can't seem to find the answers to all of this. What I would like to know is about anyone else who is suffering the same problem and how they deal with it. It is in the corner of my face and radiates through my jaw all the way to my cheekbone and even into my ear. So if you have TN, please let me know how if affects you and how you deal with it. Thanks, love ya, Blindbeard.

My Face Hurts And Its Killing Me

A couple of days ago I noticed my jaw was stiff and sore on the right side. I just chalked it up to tension (over what, I have no idea. I spend more time thinking about cupcakes then worrying.). Then last night I woke up in the middle of the night (no small feat with the meds I take) after dreaming that someone stabbed me in the side of the face to find that it felt like someone was stabbing me in the side of the face. This is my first bout with trigeminal neuralgia and I think I could have gone happily to my grave without this experience and not felt like I had missed out on anything. You read about things like, "stabbing pain, lightning-like shocks" and until you have been there it is hard to imagine the extreme discomfort of it, or at least I had a hard time imagining it (mmmm, vanilla cupcakes with butter cream frosting). I don't think I tarried over the pages talking about TN much until now. I could go into a big, long, boring description of the hideousness of the overwhelming pain in my face, but I think this best sums up how I feel: Sweet. Mother. Of. Pearl. The only good thing is that I don't want to eat anything, not even cupcakes.

Ode To Psychotropic Drugs

I can't help myself; all these Scientology videos that are making the rounds have my attention right now. I am all for letting people believe what they want and doing what they want (as long as they are consenting adults and not hurting anyone else) but I have a BIG problem with people telling me, or others, what we should or should not be doing. I especially have a problem with others campaigning against something that they do not have all the facts about. Without my psychotropic drugs I would not function, period, end of story. And I have no shame in taking them and telling others about it. I take a very high dose of these meds and I am no "zombie." If I did not have these meds I would not be able to live any kind of life. My depression is severe and all encompassing and I am not ashamed to talk about it. It is life and trying to hide it helps no one. But to try to take these away from me (or others) and tell me that they are "mind controlling" makes me so angry that if I could address those that say so, there would be no doubt that I am not brainwashed or a zombie of any kind. I would love to have these people walk a mile in my shoes and then tell me what I should be doing. All the auditing, vitamins and exercise in the world would be of no use to me without these meds. They serve a purpose and it is not to gain mind control over people. They are there so that we that suffer from depression can get out of bed and get back to life. Live your life the way you want, but do not tell me how to live mine. Okay, I am going to put away my soapbox now, I just had to get this off my chest.

Infirm Of Body Does Not Equal Infirm Of Mind

Today while grocery shopping my legs felt as weak as a newborn calf's (and probably looked it too). I was having a problem with stiffness and the ever present stagger that gives my gimp status away every time. Like most people with MS I have good days and bad days--today was just somewhere in-between--and I have noticed that people treat me much differently the worse I am. Not just like someone who has physical problems, but like someone with profound mental problems too. People take care to talk slow and loudly at me and mothers loudly say to their children, "She hurt her leg, huh?" If I do speak to someone I am treated like a child, smiled and nodded at, and any slight joke I make is sure to be met with too much fake laughter. If I say something that gives away the fact that I haven't been eating the lead paint off the house, I get shocked laughter that shows they didn't know I was so with it. I hate when people are surprised that I can say something funny once in awhile, or when I do see the surprise and see them do a double take at me when I say something above a 3rd grade level. On my list of T-shirts that I am going to make for myself I am going to put at the top the title of this post. I get tired of being treated like a simpleton who is as infirm in mind as they are in body.

Condolences: Best Served Silent

I was very surprised to hear about an old roommate of mine getting a divorce and was thisclose to giving her my condolences when I remembered being condoled to right after being diagnosed. It was still so new and I was still so bitter when an old man cornered me to tell me everything that had ever gone wrong in his life. He told me about surgeries and wives leaving, strange diagnoses and those being wrong and getting even stranger ones, every minor injury and ingrown toenail, how long it took to recuperate and the thickness of every cast. I couldn't get a word in; all I could do was nod and look for a way out. When he asked me if I felt better yet, I had to be honest and screech "NO!" in his deaf old ear. He said he thought that if I heard somebody else's problems it would make me feel better, but he thought dead wrong. I told my husband later that day that he (the old man) was probably just lying in wait for some one to come along to pull out his laundry list of things-gone-wrong to read to--he is probably haunting the same spot waiting for the next sorry sap to come by. Thinking about this, I decided to keep any sympathetic words to myself unless I could say them in person and say them quickly. I don't want to be the misguided old bookend to that magpie of an old man.