How To Deal

I have a talent for noticing things and offering silly commentary. I seem to do that a lot here, but I really would like to start writing about how it really feels to have chronic pain. I know I have mentioned it in passing, but I have never really written about the day to day struggle, at least not here.  I would like to talk to others who live with pain and learn how they deal with it. I will be 43 in a week, but I am pretty sure I already know what it feels like to be 80. The thing about always being in pain is that it's hard to focus on anything else. Pain one ups everything. Going to the grocery store and keeping your house clean are no longer priorities. I have now progressed to the stage where I don't want to get out of bed, and have trouble telling the difference between pain and depression. I don't eat because I'm hungry and I don't sleep because I'm tired; there is no rhyme or reason or schedule going on in my life. I'll get more specific starting with the next entry. Meanwhile, here is some information about my disease from Johns Hopkins.

Idiopathic Polyneuropathy

Idiopathic sensory-motor polyneuropathy is an illness where sensory and motor nerves of the peripheral nervous system are affected and no obvious underlying etiology is found. In many respects, the symptoms are very similar to diabetic polyneuropathy.

Symptoms

In idiopathic sensory-motor polyneuropathy, the patients may experience unusual sensations (paresthesias), numbness and pain in their hands and feet. In addition, there may be weakness of the muscles in the feet and hands. As the disease progresses, patients may experience balance problems and have difficulty walking on uneven surfaces or in the dark. In a small minority of the patients, the autonomic nervous system may also be involved and the patients may experience persistent nausea, vomiting, diarrhea, constipation, incontinence, sweating abnormalities or sexual dysfunction.

Diagnosis

Diagnosis of idiopathic sensory-motor polyneuropathy is based on history, clinical examination and supporting laboratory investigations. These include electromyography with nerve conduction studies, skin biopsies to evaluate cutaneous nerve innervation, and nerve and muscle biopsies for histopathological evaluation.

Treatment

Treatment of idiopathic sensory-motor polyneuropathy depends on controlling neuropathic pain, which can be treated with anti-seizure medications, antidepressants, or analgesics including opiate drugs. In severe painful conditions, patients may be referred to the Blaustein Chronic Pain Clinic for a multidisciplinary approach to pain management. Patients with balance problems often benefit from ‘gait’ training through physical therapy. Patients who have foot drop due to weakness in their ankles may benefit from orthotics.

Word Vomit

For as long as I can remember, I have had dreams that my teeth are falling out. It happens under different circumstances, but I am always left freaking out that someone will notice and I need to get to the dentist as soon as possible. I had this dream analyzed once, and was told it means I say things I shouldn't say, that words fly out of my mouth that I regret speaking. I bought into this explanation because I am the first to admit that I have a big mouth. Rarely do I think something and keep it to myself, unless it's super personal.

I am trying to figure out the difference between forming an opinion about a person and outright judging them. If I witness something I find distasteful, of course I am going come to a conclusion in my head as to whether I feel it is right or wrong. I am a very outspoken and opinionated individual and it's just ingrained in me to want to discuss ideas and think about life.

I suppose the thing I have the most difficulty "holding in" is my need to correct people's grammar. I do it to everyone, even people I don't know. I do it in social networking and in real life. It just comes out of my mouth and I have no control over it. My teenage daughter speaks well and has a wide vocabulary and pretty much my entire family is formally educated, so I didn't grow up hearing words being mispronounced or did I read poor spelling. Even before I decided to major in English and Education in college, I loved English class and learning the rules of grammar. Anyway, my love for the King's English has become somewhat of a curse. Facebook is my biggest nemesis. I am 'friends' with a couple of teenagers who are the kids of some of my friends, and if I didn't know better, I would think someone from a foreign country was writing their posts. The mother of two of these kids says "oh, they're just kids" (she probably would have spelled it 'their') and it doesn't matter because it's just Facebook. Why doesn't it matter? You either know how to speak and write correctly, or you don't, and being correct shouldn't be limited to school. Am I judging this Mom because I think she isn't teaching her kids proper grammar? Or is it just my opinion? Even worse, she lets her underage (17) son drink beer, chew tobacco and drive without a license, and she allowed her 13 year old daughter to get her nose pierced. This ENRAGES me. I know it is none of my business. I know that I am not perfect and I know there are things people think I could do differently with my daughter. (You wouldn't believe how many people are against home schooling!) But I just can't help myself! When the nose piercing incident happened, I said to my friend: "What is WRONG with you? What kind of image do you want your daughter to project?" I later apologized to her and explained I have a hard time keeping my mouth shut. She has known me since the 6th grade, so she knows this about me, but I could tell she was taken aback. I wouldn't have said anything had I not known the person long, but I suppose because we confide in each other often and were pretty close at one time, I felt I was within my 'rights' to express my opinion.

In retrospect, I realize I was judging her. The dictionary defines 'judge' as:

1.

a public officer authorized to hear and decide cases in a court of law; a magistrate charged with the administration of justice.

2.

a person appointed to decide in any competition, contest, or matter at issue; authorized arbiter: the judges of a beauty contest.

3.

a person qualified to pass a critical judgment: a good judge of horses.

4.

an administrative head of Israel in the period between the death of Joshua and the accession to the throne by Saul.

5.

(especially in rural areas) a county official with supervisory duties, often employed part-time or on an honorary basis.

Obviously, I am not a paid official,  or authorized administrative head. Does this mean I should never share my opinion as to what is right or wrong? There are opinions, and there are things that are down right factual. For example, letting your underage child drink alcohol and drive with no license is illegal, and it is not just my opinion that it shouldn't be done. On the other hand, I am aware it's my opinion that you shouldn't let a girl who has barely reached her teen years get her nose pierced. I guess what I am saying is, just because I think it, doesn't mean I have to verbalize it. This is something I really need to work on. It's just so hard, though, when you witness something you feel is morally reprehensible, to keep your mouth shut - at least it is for me.

I Voted For The Tall, Rich, Handsome Guy

I am more than a little upset about Obama being re-elected. I will proudly say I voted for Mitt Romney and although I kind of suspected Obama would win, Mr. Romney gave me hope that maybe it wouldn't  happen.

This is not about my simply siding with a particular party. I know and accept that people have different views on what our taxes should be spent on and there are social issues that people have every right to form their own opinions about, such as gay marriage, etc. I believe those issues should be left up to the States and the Federal government should stay out of it.  This is what makes America great - the right to form your own opinions and live where these opinions are shared. It is also a person's right to choose how much education he receives to assure he will be successful in life. We live in a free enterprise society (albeit perhaps not for much longer) and hard work and determination will make you successful. You shouldn't be 'punished'  because you are successful. Your own success should be celebrated how you and your family choose.  People can celebrate by living well and can share their success with those less fortunate, but it shouldn't be a requirement.

I won't say too much about the mess Obama has gotten this country into, because people are already aware of that. For some reason, they ignored all of that and sill voted for the guy. More than his obvious screw-ups. what scares me the most is how little we know about this guy. I am not someone who believes everything she reads, but there is enough evidence out there to suggest Obama is not who he says he is, and that he is not out to better this country. I think he would be better suited to be in the entertainment industry as an actor or maybe a singer. The guy wants to be a Rock Star. He wants to be in the public eye. He wants to live in a nice house. I don't think he has a clue what the hell he is doing and is flying by the seat of his pants. I am so embarrassed for our country when I see him dancing on the Ellen show and chatting up celebrities. He and his wife have no knowledge of protocol when it comes to meeting foreign leaders. He changes his mind on issues depending on what he thinks people want to hear. He was against gay marriage, then he said he was fine with it, and now that he has been re-elected he says it should be left up to the States.  I could go on and on with the specifics, but the bottom line is, I don't trust this man. I don't believe a word he says. I can't stand his voice. I hate the way he walks. Most of all, I am scared. It frightens me to think of the world my daughter will be living in. Things pop in my mind, like, lining up for gas and food rationing.

After the election, I told myself I wasn't going to watch the news anymore. I want to be ignorant. I don't want to know what this man is doing to us and I want to just stay in my little bubble with my family. I know this frame of mind won't last, though, because I am  the type of person who likes to stay informed.

I don't care what color Obama is. I am getting sick and tired of his race being brought up every time I take issue with him. I do believe his race enabled him to win his first term, but that is an observation, not a criticism. Mitt Romney would have been the best President since Ronald Reagan. I like Mitt so much as a person. I believe what he says. I trust him.  I like the things he has done with his life and the love he has for his wife and family. Speaking of which, Ann Romney is just about the classiest woman on the planet. I would have been so proud to have her be our First Lady. Michelle Obama just uses her position to take lavish vacations and bill expensive lingerie to the tax payers.  Mitt Romney cares about people and is so smart about business. I hope I get to meet him some day. It would be such an honor.

For Natalie

A few days ago I received a package in the mail from a friend I went to High School with. She lives in another state, but we keep in touch via Facebook and phone. She hasn't been around me since I developed Neuropathy, but I have told her about my pain and how it affects everything else in my life. The package contained hair products I have been wanting to try out, but couldn't justify spending $30 a bottle at this juncture in my life. I had casually mentioned wanting to try out this product (which, of course, is CRUELTY-FREE!!) to Natalie on the phone once, and she remembered and thought enough to make a care package for me and surprise me with it. It's not even my birthday!  I was so excited it was almost silly! To know you're being thought of, particularly when you're going through a rough time, well, there's no better feeling. If you know anything about chronic pain, you know it casts a dark shadow over even the simplest things. It is very difficult to stay positive and you sort of want to retreat into your own little cocoon and hide away. Knowing that someone is in my corner rooting for me is really liberating, particularly since I have several friends who have conveniently disappeared over the years as my activity level has diminished.

So, thank you, Natalie! Thank you for realizing that even though I can't go dancing anymore, even though my 'long walks on the beach' days are long gone, I still want to feel pretty. I'm still a girl. Thank you for remembering I am still a human being.

All I Need Is A Good Defense

As a seasoned veteran of many rock and heavy metal shows, seeing a Fiona Apple show was a completely different taste for me. The show was so...calm. People were intently watching and listening. It was so grown-up. With the exception of that crazed fan sitting behind me shouting "I Love You Fiona!," and "You're so fucking hot!" during lulls (which was really annoying and not appreciated by anyone), I was able to hear and see so much more than people body slamming and head banging. The venue (Durham Performing Arts Center in Durham, NC) reminded me a bit of Constitution Hall in DC or The Beacon Theater in Manhattan, except it was cleaner and classier and the amenities were aplenty.  Attendees were falling all over themselves  to accommodate your every need, which was good, except they went totally Nazi toward anyone trying to take a photo. I wanted at least one photo, you know, just to say I had been there, but I had rent a cops all around me so I didn't even attempt to take one.

Because it takes a lot to get me out of the house these days, I was like a wide-eyed kid, taking it all in, people watching and behavior analyzing. What I noticed first and foremost was the audience. I think I may have seen one Black guy, a few people my age, and a few dudes, and the rest were teeny tiny little girls. It was difficult to determine the ages of the girls because of their tininess, but I would guess early thirties, which makes sense because Fiona debuted in 1996 and they were all in college then. I was a 26 year old mother of a one year old, but I have that timeless hipness that transcends having to be in college to appreciate certain music. I would like to think I still possess that, despite the fact that I rarely get out anymore. Anyway, I wanted to get a t -shirt, you know, to say I'd been there, and the t-shirt sizes were definitely a reflection of the audience as all the cute shirts were in Girl sizes. I asked the attendant what a Girl size was. She said they were like junior sizes and ran smaller than regular sizes. So regular sized women could pay to see Fiona, but only the 5 feet tall teeny tinies could represent that on their (lack of) chests in public. Personally, I think Fiona would be happy to have had my ample bosom display my fandom, but alas, I just picked up a shirt for my daughter, who was with me.

Fiona's band opened the show without her, coming on one by one with introduction from the guitar player, Blake Mills. He would play a little something, then the bass player came and played with him, then the drummer came out (a chick) doing her thing, and lastly the keyboardist took stage and they all four played a few tunes sans Fiona. They all left and in 30 minutes or so, came back accompanied with the little girl with the huge voice, Fiona Apple, belting out "Fast As You Can," one of her more rockin' tunes. She didn't engage the audience much, but when she did, and from what I could understand over that crazed fan chick behind me, she facetiously spoke of her preference to be called "Sugar Tits" rather than "Sweetheart," by the cop that arrested her a week earlier for possession of hash. She's also sick of being talked about for her  skinniness and people saying she has aged badly and the stupid jokes that were made when she was arrested. She said "fuck" a lot.

I don't want to lump Fiona in with all the other angry girl singers (like Alanis Morrisette) but it does seem that she puts out a record only every five years or so, corresponding with a break-up. I have always been such a fan of her writing. She is a true singer-songwriter who spills her guts and I can really relate to the heartache and depression and it seeming like you feel things more intensely than most people do. She says things like, "how can I ask anyone to love me, when all I do is beg to be left alone?" and " I kept touching my neck to guide your eye to where I wanted you to kiss me when we find some time alone.." You can't appreciate her without dissecting her lyrics.  She is all about substance over style and doesn't rely on lip-syncing so she can get her choreography just right. When she opens her mouth, the contrast to how she looks and how she sounds is astounding. She has this sultry, alto, bluesy voice that somehow comes out of a 90 pound vessel that is so unexpected and she plays piano with a confidence and force that belies her stature, as well . She wore a blue tank dress (intermittently covered with a home made t-shirt) with black tights and brown Mary Jane shoes and carefree messy hair that screamed, "don't look at me, just pay attention to my music." She twisted around like a little girl with her hands in her pockets, occasionally jumping up and down and writhing on the floor, clearly being motivated by the music, not dancing to please her audience, even though she did. I want to know her. I want to hang out with her.

It was great seeing Fiona and it was also just great being at a concert again. I had almost forgotten about how exciting it is and how young it can make you feel.




                                                 ***(Note: I did not take these photos)***

Byron

In secret we met
In silence I grieve
That thy heart could forget
Thy spirit deceive.
If I should meet thee
After long years
How should I greet thee?
With silence and tears.
--Lord Byron

Anything For Rock N Roll

I live and breathe for music, and I have enjoyed live shows since a very young age. My first 'real' concert was when I saw Rick Springfield at age 11. My brother, 14 at the time, and his best friend took me and my best friend. It was one of the best experiences of my life! Since then, I have seen countless other artists and have invested a lot of time and money in this hobby.

I think the last show I saw was Rick Springfield in 2004, when he was at The House of Blues in Myrtle Beach, SC. I was able to watch his sound check and have my picture taken with him because my friend and I purchased special VIP passes. I was diagnosed with neuropathy in 2000 or so, and walking for more than five minutes, prolonged standing, and pretty much prolonged anything causes me great pain in my extremities. I am in pain even when I am just sitting still, so any activity beyond that is quite excruciating. At this particular show, I had seats in the orchestra area, which, at the HOB, is first come, first serve. My friend Brenda, also a Rick fanatic, and I wanted to be right at the stage, so we arrived several hours early (as did hundreds of others) to wait in line. We were able to get right at the stage! We stood for several hours until Rick came on. There were no actual seats in the front area, so people were just crammed in like sardines in chaotic fashion. I was in pure agony the whole time. My legs and feet felt like daggers were being plunged into them, I was dizzy, and just plain miserable . I used my friend's shoulder to lean on from time to time to get some slight relief, but basically just put up with it. When Rick finally came on, I forgot about the pain for a bit and enjoyed the show, but for several days after, I was completely bedridden. I could barely walk or stand. After that experience, I pretty much came to the conclusion that that would be my last Rock and Roll show.

That was about eight years ago. One of my favorite artists, Fiona Apple, is currently touring to support her new CD. When I found out she was performing at The Durham Performing Arts Center, I jumped online and scouted out the venue. It's not a huge place; it kind of looks like a glorified High School auditorium, but nice. It reminds me a bit of the Beacon Theater in New York, where I saw Rick in 1999. I called DPAC, and told them I am not wheelchair bound (although I do have to use one during extended outings) but that I cannot climb stairs or stand for long periods. They said they could accommodate me, that there were elevators and handicapped seating. I had to call them directly for tickets rather than use the Internet, but I ended up getting seats in the front/orchestra area, a mere 4 rows from the stage! I am quite excited! I bought two tickets and will be taking Lindsay with me. The show is at the end of September, which gives me time to figure out other details, like lodging and parking. I can't/don't drive much, so I'll need to work all that out.

There are so many things, even just every day things, I am unable to do these days. I have accepted it, for the most part, but it's very easy to get down on myself, particularly when I think about the future. Going to this show is a MAJOR deal for me. A few hours of escape will do wonders for me, and I am thrilled to share this with my daughter. She has had to suffer the consequences of my illness, too, and I have incredible guilt over not being able to get out and do things with her. I plan to research and plan more fun things we can do together!

Durham Performing Arts Center:
http://www.dpacnc.com/events/seating_chart