Saturday, February 23, 2008

Last Will And Testament

I, Blindbeard, being of unsound mind and infirm body do wish to dispose of what meager property I have to the following parties:

My ridiculous cane collection to the nursing home my mother works at. They could use a little humor in their lives.

My empty toilet paper rolls to my sister so she can add them to her collection by the trash can in her bathroom.

I want to pass the torch of talking about this stupid disease with humor and honesty to Braincheese (whose comment about the plague amused me too much--I think I have it too) and the author of MultipleSclerosisSucks. Keep up the good work of telling it like it is without a sugar coating or "its such a gift!" attitude.

My rotten body to whatever MS research clinic would have a use for it. Hopefully the study of my scarred spinal cord and defective, crazy and abnormal brain will help others. If not throw my body to the pigs.

At this time I can think of nothing else of worth to pass on. But if I survive this hideous bout of flu/plague I will be back and may render this null and void.

Thursday, February 21, 2008


The other day my sister and I were driving through an upscale neighborhood in the town I live in (which is where my neurologist lived before he left me for Florida) and while we were looking at the houses I was sidetracked for about 23.7 seconds. I started thinking how nice such a big house in such a fancy neighborhood would be. And then I came back to reality and myself. If I have learned nothing else from this disease I have learned what really matters in this life, and, sorry to say, big fancy houses ain't it. What would I do with all that space? I could never keep up with it and I don't need it unless I was going to start an orphanage, which is the only reason I can think of that one would need 10 bedrooms and 14 bathrooms. And how impressive would a fancy car parked in the handicapped spot look? Not very, especially when they see me lumbering out with a cane on a bad day. I don't want to play keep-up-with-the-Jones' when I am content with not being like everyone else. Status symbols mean nothing to me when I can't even go to an outdoor event in the summer anymore, and I am not impressed by others' displays of money. You can keep your fancy homes, and cars and whatever else if it makes you feel better, I won't hold it against you, but I am not envious--I would rather be able to walk my dog around the block. That makes me envious.

Friday, February 15, 2008

Here's To You, Kid

I am very flattered to be added as a link to Braincheese's blog. I am also loving all the comments that I have gotten. I love how MSers do not tear each other down--goodness knows our bodies are tearing us down enough, we don't need any help with that. But I don't want to get all maudlin on anybody and make anyone think I have a soft side, EEEKKKK! I just wanted to let everyone know I'm feeling the love and sending it right back. Now back to my bad attitude! I am off for my infusion of Tysabri to give me some relief until the next infusion. Pin cushions unite!

Wednesday, February 13, 2008

*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.

Tuesday, February 12, 2008

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.

Saturday, February 9, 2008

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.

Friday, February 8, 2008

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.