going nowhere

I have a job. A very good, well paying job. I work as a network engineer, managing/designing/maintaining computer networks. No, I don't work with computers, or users, or printers, etc.  I work on the network. The routers, switches, firewalls. I work for retail. So next time you are in a store somewhere and the clerks are complaining the network is down, or slow, then someone like me has probably been called to work on the issue. Much of the time when it is stores that are down, there is a telecom vendor involved, and data links or the WAN is down, and it is up to the vendor to resolve.

I also work on VOIP systems.  We have our own customer call center (to support outside customers), and a help desk call center (which supports users at stores, or corporate, which supports internal customers).  The help desk escalates issues to my team if the issues are network related and the help desk can't resolve.  VOIP technology puts the phones on the network, and merges both the world of computer technology and regular telephone technology.  Our telecom group is new to that whole idea. So I work with them because I have background in it.

I'm a key employee, and have lots of specialized knowledge and experience. Sometimes I think I know lots about a lot of things, but not about any one thing.  However, while it might sound conceited, I know a lot more about most of the things I do than anyone else here. I also think that I've gone as far as I can career-wise.  I am not a manager, or supervisor. I am a team lead and have people under me, but they are not direct reports. I'm not even sure I would want to be in management. Management can be so political and such a bureaucracy. I think I prefer to work on things and solve problems and design things.  I'm not sure I would be able to do all of that and be effective in management. I'm also pretty sure I wouldn't even like being in management.

I'm thinking about some of these things because a good friend/coworker was just promoted to manager of her dept.  She was a lead much as I am, only with the DBA team. Her manager will be leaving, so they offered her the position. I don't see that sort of thing being an option in my team. I am fairly certain that my boss is going nowhere, and neither is his boss. Also another good friend recently took a new job within her company and is now a manager of her division. She talks about how she likes, no loves her new job. I like my job, but I don't love my job. I used to love my job when I worked for the company prior to this one. But it was privately owned, and the family decided to sell it off, resulting in a lot of people including me being laid off. It wasn't as bad as it sounds, I got a decent severance and a key employee bonus to stick around until the company dissolved. I was lucky to find this job, and have a smooth transition from one to the other without being without a job in the middle. But this time it is just a job. Not a job that I love.

So am I going nowhere? I guess I'm trying to decide what I want to be when I grow up. I've re-invented myself several times in this life. When I was young, I taught music lessons for decent money, that and did some baby-sitting. Teaching banjo lessons was a lot more lucrative than any other job for a 14 yr old - I made $25 for 1/2 hr session. I was good at playing/singing. Not great, but good. Banjo, guitar. I had fun with it. I also took piano lessons for several years and could play that. Now (for some years now) I can't play.  My brain can't process reading music anymore.  I can read it, but it is like translating a foreign language, into another language and then from there into a 3rd. that's the best I can explain it. I can look at the music and think about it then, tell you what the note is (a,b,c,d,e,f,g etc), then look at it and figure out the rhythm. but to put it all together? Even when I was young I played much better by ear than sight reading. As for pickin' a banjo, or guitar, my hands wouldn't cooperate now if I remembered what to do. My fuzzy fingers on my right hand would complain if I had to play for very long, and I'm not sure I could work my fingers to pick the way I used to, or even do the cords with my left hand. As for the piano, I lost all memory of how to read/play the bass hand. I can pick out a melody with my right, but to put the two together? forget it. I think it maybe partly MS related. Or maybe it is just result of some other brain injury from the past. I still love music though. And I can still sing. J & I sing together in a local womyns chorus. Music is something I've always felt close to, not that I ever would have been good enough to really make any money at it.

My first real career was in art...

Furry Friends

silent heroes; unsung heroes

People that overcome serious hardship or disability or even pain with a smile are amazing to me.
My boss was telling me about his mother-in-law. She was diagnosed a couple years ago with ALS (Lou Gehrig disease).  That is a really terrible disease. I've known of about 2-3 people with it, family of friends, or friends of friends, etc. Basically most people that get it end up not being able to control any of their muscles and end up totally helpless and dependent on others.  Their minds are fine, but trapped in a useless body. My boss was saying his MIL, we will call her millie to make it easier, was now at the point where she has lost use of both arms, legs, etc. Last thanksgiving Millie was there, and still able to walk and talk and get around.  You could tell something was wrong, but not a major issue yet.  A year later, she is in a chair, the daughter has put an elevator in the house so she can ride up and down, she can't control her power chair anymore so someone else has to do it for her. They put her in the elevator and send it up and then climb the stairs to meet her. He was telling what a good sense of humor she has.  How something happened and the sister put her mother in the elevator but something happened on the way up and Millie was forgotten in the elevator.  She could hear everyone laughing and talking but couldn't make a sound to call attention to herself.  They figured she was there about 15 min before another sister thought of her, and asked where "mom" was. How frightening would that be for most people? or how pissed off to be left? Apparently she saw the humor in it.  I asked how she communicates since she can no longer speak and can only grunt.  He said she has something called eye gazer? Like a screen with either letters or words, and you look at it and blink and it is smart enough to identify what it is you are looking at and uses that to write words.  He said she has I guess the equivalent to a blog on a caring and sharing website.  She writes long journal entries much like the story of being left in the elevator regarding different things that happen day to day.  The entries are full of humor. He said she is an amazing woman.  I agree. How easy would it be to just give up. Become angry or bitter? But to face life with humor, that is amazing.
Another hero I'll mention was my dad.  He lost the use of his left arm when he was in his 20's. After returning from WWII. He was in college to become a surgeon. He'd been a med-tech during the war. He had a motorcycle accident. Hit and run. They didn't expect him to make it.  He was in the hospital for several months and they didn't think he would make it. The family was called. He went in a healthy young man that probably weighed 140? he dropped below 90 during his stay.  After he got out, went through rehab. He met my mom. He changed his career path and instead of becoming a surgeon, he continued to college and ended up getting his phd and became a professor teaching pre-med students.  He could do anything.  I remember growing up thinking he could do anything. He was able to do anything anyone else could with the exception sometimes of needing someone to "lend a hand" and hold something.  He could tie his own shoes. I'm not sure I could do that one-handed. He coached my brother's little league and hit balls to the various positions and could play catch, anything anyone else could do, my dad could do it too.  I never thought much about it. My brother has said since that he most likely had to deal with some extreme pain. phantom pain, etc.  He never considered himself handicapped in any way.
That was part one.  Part two, in 2003 he had a flu shot in the fall. As a result he ended up contracting Gilliam Barre. He was medivac'd to a hospital, and they ended up giving him plasma to stop the progression.  His hand (only one remember) and feet and legs were paralyzed. GBS starts by paralyzing the extremities. Then it progresses in to the trunk.  Then eventually to the heart which is of course a big muscle. He fought back. He went to a rehab hospital where they normally treat stroke victims located about 1 hr from where my folks lived.  He stayed there a couple months.  He learned to walk again.  To feed himself again. He made it back.  Not as good but he fought and came home. Unfortunately kidney infections and urinary tract infections plagued him.  Some of that was due to needing a catheter (another side-effect of GBS). His immune system was weak, and couldn't fight the infections, which usually ended up meaning another stay in the local hospital.  Each set back was harder to overcome, he would lose ground.  Suddenly my dad looked old.  Looked feeble.  Looked like he might not be superman after all.  But his pride.  He had so much pride.  He ended up with a wheelchair at the house, he walk short distances but it tired him so.  He could transfer himself from the chair to the toilet, to the bed, to his recliner etc.  My mom would have been too weak to do that for him.  He ended up with a bed sore on his bottom that required operation due to an infection.  Unfortunately they had to remove so much that he had to stay in the hospital, then ended up moving into long term care.  He so wanted to keep working on rebuilding his strength.  Insurance would no longer pay for PT or OT. He tried to get the aid's to help him (they did the best they could) to do some of the exercises. But it wasn't the same. And for whatever the reason, he kept losing ground.  I say GBS (and the flu shot that started it) was the cause of death. The official reason was myocardial infarction.  Fancy way of saying his heart stopped.
My third example of an unsung hero is my mom.  The entire time my dad was struggling, she was there beside him.  When he was in the rehab an hour away she was driving back and forth to be with him. When he came home and couldn't sleep in the bed because he didn't find it comfortable, she too slept in the family room in her recliner so she could be close by to hear him in case he needed her. When he went back in the hospital she continued to put her life on hold and spent each day with him. When he would suffer with hallucinations from the antibiotics, she looked past it. He was never a cruel man. He was always full laughter, and smart, and kind.  The antibiotics made him a little crazy.  He was sure there was a conspiracy that someone was out to kill him.  He was in a fantasy world mixing the past and the present and some fantasy tale of who was involved and what was going on.  Several occasions he would beg mom to take him home, that they were after him.  At the worst, he decided she was in on it.  Was mean and spiteful.  Spoke to her nasty in front nurses. Embarrassed her (for him) completely.  He even called 911 and then called a couple former students in the middle of the night to ask them for help.  He would call mom at night wake her from what little sleep she got to beg her to come get him.  She ended up having to take the phone away from him so that he couldn't use it at night. She took to sleeping at the hospital in his room.  He had a roommate, so there was no spare bed, the one chair for visitors was uncomfortable to sit in much less to sleep.  But she was there. Day after day. Night after night. She neglected her health because she claimed she didn't time to go to dr's or do those things. He needed her.  She's been lost since he died.  They were married for almost 55 years when he died.  Now her health isn't the best, and I wonder how much longer she will be here.

Anniversary celebrations

I missed celebrating my "MS" anniversary.  How could that be? Some people seem to make a big deal of it.  Do they send out party invitations? One never knows.  I was diagnosed Sept 2009. Started Copaxone on Halloween - 10/31/09. That's an easy date to remember. I'm really bad at remember dates.  I can remember my birthday. Major holidays. My daughter's b'day, my partner's b'day. I can remember other family member b'days.  So maybe it is anniversaries.  But hey, I'm not the only one. M and I first started dating back in 2000. Then we broke up for a while in 2001, and got back together in July of 2002. We moved in together in August of 2003. Exchanged rings in a ceremony in October 2003? But dates? well. at least I'm not alone in not remembering the exact date. Maybe if I was in therapy I might find that there might be a reason for that. lol
Most likely I have had MS a lot longer than a year though. I know if I think back I've had some symptoms etc over the years.  Some might be questionable. But I think that the problem that I had back in 2004 with numbness/tingling in my right hand/arm is related.  At the time I saw various doctors, ended up with it treated as a workman's comp case. I work on computers - so obvious solution - carpal tunnel. Before I got mixed up with seeing the WC case docs my regular doctor sent me to a nerve specialist who ran some sort of test seeing if the nerve pathways in my arm "worked" Basically he attached some sort of electrodes to various parts of my hand and arm, and sent sound waves, what a weird feeling! He couldn't really find any issues with the paths from my shoulder all the way to my hand. So his results (for carpal tunnel) were inconclusive.  Later, after getting moved over to seeing the WC doctors, well, I wasn't just having "tingling" I was having pain.  So I was willing to try most anything.  They insisted it was carpal tunnel, that having the surgery would "fix it" So... to make a long story short, I had the surgery. I had my doubts at the time.  My hand wasn't really numb - its more like sensations are too much - over sensitized. And it wasn't just my fingers, most people have either their thumb, or certain groupings of fingers depending on which nerve is impacted.  I had it on my entire hand. And up my arm.  No one had a really good explanation of that.  So anyway, I had the surgery.  Amazingly, it did help.  I think that could be coincidence.  Or may some of the meds I took helped with the pain, etc and time healed things.  Who knows. However, the tingling did come back.  It maybe was a month or several, but I now always have a slight tingling in my right hand.  Oh, the other reason carpal tunnel isn't so likely is that while most people might end up with it just in their right wrist, being left handed, it is less likely. I use my mouse left handed. I use my left as much or more than my right. So why just in my right? Who knows.  The tingling is much like what is in my feet now.   My feet are not as bad as they were in the summer of 2009 when I first was going to the doctors to see what's wrong, but sometimes it is worse. Sometimes it flares. I often have the feeling of "balled up socks" that I'm walking around on.  The tingling, in my feet, sometimes up my ankles.  I haven't had it go all the way up to mid thigh like it did progress in the beginning.  So, again I think my right hand was one of the first MS symptoms.
Recently I was reading on another blog regarding the "tingling" and comparing that to white noise.  That is a very good analogy.  And yeah the white noise feels a lot better than the "noise" that was used during that test.  That was like squeals and squelches, sort of like feedback.  But I don't find it (the white noise) comforting.  It could be worse, yes. Pain is worse.
This was a busy month for Dr visits.  First my neurologist - gave me a clean bill for moment, Go back in 6 months.  Mentioned at some point will want to "find an excuse" to do a MRI (insurance I guess wants an excuse), in order to check on the lesions in my head. See if they are worse, or active, or ? I don't think go away.  I guess I should read more.  I also saw the surgeon about the results from my thyroid test - all normal. So guess my body doesn't miss that 1/2 a thyroid - at least not yet.  I go back again in 3 months to test again.  Saw my regular doc today.  got results from the rest of my blood work.  My LDL bad cholesterol is still above 100... apparently keeping it under a 100 is the magic number for someone that is borderline diabetic.  So I'm to increase my cholesterol pills. Also someone messed up in ordering the tests and didn't order an A1c to test long term blood sugar, and my fasting sugar was up - it normally is, apparently my liver loves to produce insulin overnight whether I need it or not.  So she added something else to help with that. I feel like I have to take a pharmacy with me when I travel.
Ate dinner with a good friend the other night. we were talking about how things change over time. She was considering whether she wanted to take a job promotion, or look for another job somewhere else. During the conversation we talked about how insurance benefits play a big role in our decisions now. She had a liver transplant over 20 yrs ago. She is very healthy now, but will be seeing doctors her entire life, and having tests etc to make sure she isn't rejecting the liver. She mentioned how before our conversation she really didn't think about that.  And how unlike her that was.  She said she always thinks of her health, of medical needs, etc.  For her to have been so nonchalant about it, so unlike her. And it is an important part of our decision making, etc.  I moved to PA back in 96, left a job that had insurance benefits. Moved with a 11 yr old child. Moved over 1000 miles. Without a job, or a definite future.  Sure that it would all work out.  It did. Would I do that today? I'd be too afraid.  I'm afraid to think about switching jobs today without making sure I can keep insurance coverage.  Yeah, there is cobra, but that cost $$. Plus I have to pay a mortgage. Life is different now.  Sure, if I had to, I could go or do, and I know that everything would work out.  It always does.  One way or another. But I won't jump now without making sure there is a net.

Edie & Thea

Someone sent me a link that I want to share here. 
Edie Windor and the ACLU Challenge the "Defense of Marraige Act"

Edith "Edie" Windsor, who shared her life with her late spouse, Thea Spyer, for 44 years, filed a lawsuit against the federal government for refusing to recognize their marriage. The lawsuit challenges the constitutionality of the "Defense of Marriage Act", a federal statute that defines marriage for all federal purposes as a legal union between one man and one woman as husband and wife. Windsor and Spyer were married in Canada in 2007 and were considered married by their home state of New York.

I think Edie tells it better than I possibly could in her video clip.  Please watch it. 

what is real?

I got a comment on an earlier post regarding the outcome of surgery I recently had, and it made me think of the topic of this post.  When you meet people online, either via chat rooms, message boards, blogs, etc, there is talk of this being a "virtual world" vs the "real world" which is the one we live and breath and work, etc. 
Sometimes, I think the people in the virtual space can be as real as those in real life.  For example, I just had a virtual stranger ask me how I was, if I was ok, after having some surgery.  That to me is a show of concern.  I don't think imaginary or virtual people are that real.  Also, Diane seems very real to me, I read her blog, know (I think) quite a bit about her from her blog, so she seems like a friend.  Of course someone can watch a TV show week after week, and get to know the characters and they can also seem like people you "know", almost like friends. But the difference here is that online, there is an interchange.  I read her blog and can comment, and she can comment back on my comments, and she reads my blog and leaves comments for me as well.  Mine is not near as interesting as hers, and I don't write near as often. So by exchanging comments it becomes a form of conversation, and we can get to know each other, at least superficially. which makes it more real.  I could also argue that I have friends (acquaintances?) that knew I was having surgery and haven't made any effort to check on me in real space, so having someone do that in the virtual world, is a nice thing.
One of my favorite books is a kids book. The Velveteen Rabbit.  In the book toys become real through the love of their owner.  I think I had a point here somewhere, but I think I lost it.  So instead I'll just say that maybe virtual space is sort of like that too, it becomes as real as those who participate in it.  And yes, I know there are many fake people on the Internet that are out for no good.  My mother always warned be about those people.  You know the ones out for no good.  I think they should wear a label or sign.  I don't believe everything I read or see.  But on the other hand, I don't doubt everything or disbelieve it either. So I will continue to write my blog for my own reasons, and continue to feel a part of a community.  Which is a really nice thing.

the future, predictions, predictability

I posted about being worried because of being denied disability insurance.  But for the moment, I feel pretty good.  As M told me the other day, she's glad I'm as good as I am.  I am sure not going to run any marathons, and some days I limp and hobble along, but that is the bad knees, not the MS.  In some ways, the whole MS thing hasn't really hit home.  Sure I saw the little white lesions on my brain MRI.  Sure, I have had issues with numbness in my feet and legs, some of which will flair back up, I sometimes feel like I walk on a pair of balled up socks under the ball of my feet.  But is it really real? 
I believe that I still have a long productive road ahead, of work, life, etc.  There are a lot things I haven't done yet that I want to do.  So, I am stubborn enough, determined enough, to want to do them.  Right now, M & I are working towards getting healthier, eating better, getting more physically fit, losing some of the excess weight we have both put on over the past few years.  I get frustrated with things that seem to keep jumping in as road blocks - things like breaking my ankle, finding out I have MS, etc. But I'm no quitter.
I have had to learn to reinvent myself several times in my life.  M likes to say I grew up in "leave it to beaver's" household.  In some ways I did.  When I was small both my parents worked, but my mother quit her job and took care of me and the house and my brother by around the time I started school.  My parents were married more than 52 yrs when my dad died.  So yeah, I was fortunate. 
It didn't stop me from wanting to get out and on my own as soon as I could.  I couldn't wait to leave home, to leave the small town and everything behind.  I dropped out of college to get married at 18. I followed my husband overseas where my daughter was born.  We had a very rocky relationship.  Abusive.  I thought many times about leaving and heading back home, but I was too proud.  So I stuck it out.  While overseas, I managed to snag a good job with good pay, as a graphic designer I liked what I was doing. Then I found out I was pregnant.  We came back to the states soon after J was born.  I was trying to figure out if we could make things work.  What the future was going to be.  If I had the guts to leave and strike out on my own again, this time with a baby.  I didn't have to make a choice.  One night the police called to let me know my husband had been picked up.  He was trying to arrange a hit on me for the insurance.  Didn't much care what happened to our daughter, then decided she was worth more to him alive, due to being able to stay in on post housing and out of the barracks. So my choice was made, and I again had to start over. Thankfully my family welcomed me and my daughter til we got back on our feet.  I went back to college and managed to graduate with honors.  I obtained two degrees, one in accounting and the other in computers.  During the final years in college I worked at a local accounting firm, and went there full time and become a CPA after graduation.  I worked hard, raised my daughter and life was good.
After another 7 yrs or so, I guess the 7 yr itch struck, and I also fell for someone who lived 1000 miles away.  I also felt stifled in the small town, in the bible belt where I was raised.  My lifestyle was not that welcomed there.  I met someone online, what started as a friendship, chatting online, exchanging emails and phone calls, and long letters, even trips back and forth across the country turned into a relationship.  So I packed up me & my daughter and we moved.  Once again, my choice in a relationship continued to be lacking, so that didnt last.  M tells me, that it was a necessary step, one that brought me here to meet her.  Perhaps.  I can't argue with that.
M & I have been together almost 10 yrs now. Good years.  When I moved across country 15 yrs ago, I reinvented myself again.  I gave up the accounting which I had come to find tedious and focused on the computers and then branched out into networking and then VOIP.  Most of the time it is work I enjoy.
Whatever happens going forward, I'm not afraid of the future.  It will all end up ok.  I am a believer in good karma if nothing else.