Thursday, December 23, 2010

Wonderfully Independent - another word for stubborn

One thing I definitely get from my mother & dad is a stubborn streak. I like to think it is persistence or determination, but I know it is also stubbornness.  Not that it is a bad thing sometimes to be stubborn. It has its place, and sometimes that is a very important place. Other times, well it just means you end up butting heads a lot with others that just can't seem to agree with you.
I wrote a bit about both my mom & dad in my last post about unsung heroes. I think what I described about each of them speaks to their determination and dedication. Maybe part of that was that they were born in the early 20's and lived through the Great Depression. I know that hearing stories about how they struggled to make ends meet, especially in the beginning of their marriage, it wasn't easy. But they did what they had to do.
I mentioned my mother's health is not good. She drives herself to the doctor, she drives herself to the hospital when she has to go for one of her periodic stays. She has friends who would gladly take her, but she hates to be a bother.  We were talking about it the other night on the phone. She'd had to have an endoscopy and had a friend from church take her.  Mainly because they wouldn't do it unless she had a ride. In any case, she says it all started back when I was born.  Figures it would be my fault - lol. The night before I was born, my dad ended up in the hospital with kidney stones.  He also ended up staying a day longer than mom - and claims his effort in passing the stone was much worse experience than childbirth, they agreed to disagree on that one.  In any case, mom was home alone with my brother who was almost 11 at the time when she realized she needed to head to the hospital.  She called her folks (who lived several hours away) to come stay with my brother so that they would be there in the morning when he woke up. She drove herself to the hospital during a snow storm, having to stop every few blocks to scrape the windshield. Later my brother would ask why she didn't wake him so that he could ride along and at least take care of the scraping, and she said it didn't occur to her.
A couple years ago during the winter, KY suffered a bad ice storm that took the power down through-out major portions of the state for several days.  I spoke to mom on the phone the first night of the storm and at that time she was fine and the power was still on. My brother tried to call while we were talking and then called me to see if I'd heard from her, when I indicated we were on the phone, he said ok he just wanted to make sure she was ok.  The next day the storm was still bad, and once again I get a call from my brother asking if I was on the phone with mom - no I wasn't this time.  I had thought I would try her shortly but hadn't got to it yet.  So we decided the power was out.  She has one phone that is an analog, so sometimes she can answer it even if the power is out, but we figured the phone lines were down as well.  I tried her cell, but could not get through, but had heard that the cell towers were also impacted by the storm.  My daughter was with me and she had the idea of contacting the police to see if we could find out anything.  I spoke to a dispatcher who was very nice and offered to send a car to check on her and to see if she wanted to come to a shelter they had set up, and to call back in an hour to see what they found out.  So I let my brother know and we waited an hour, then I called the dispatcher back, and was told that yes mom was fine, that she doesn't have power or water, or phones, but that she was doing ok, and that she refused to go to the shelter.  I got on the phone to let my brother know. We were both sure that this was another example of mom being stubborn and not wanting to be a bother. He was fussing about how he couldn't even call her on her cell to try to talk sense into her.  You see, if you ask mom how she is doing, her standard answer is that she is doing ok. or I'll be ok. She could be in great pain. Dealing with who knows what, and sometimes she would share what it is that is going on. But each time she would finish by saying "but I'm ok. I'll be ok. Don't worry" So the dispatcher telling me that she refused to go to the shelter when the police car went to check on her, and saying she was "ok" that fit. She was just being stubborn. It sounded so like her. We were worried. The temps were down below freezing. People were without power for most of the day and possibly the night before. I was worried that she couldn't open her garage door to leave in the car if she needed to do that to go someplace warm.  The garage opener of course wouldn't work without electricity. We decide we will follow up again in the morning to see if we can get someone to check on her and talk her into going somewhere.
The next morning I get a call from mom. Her analog phone is now working.  She wanted to tell me that she was "ok" and that my brother had already talked to her and that he was driving down (5.5 hr) to get her and wanted to let me know.  He was worried he would find any place for gas.  I called him and told him if he could get to mom's then they could drive her car back to his place.  It most likely would be sitting in the garage with a full tank of gas. I was right, it was. Good thing too. There also wasn't any gas stations open in that part of the state.
Later when we talked to her about the ordeal. She said the power had gone out that first night a couple hours after I talked to her.  The house slowly cooled off over night until it was down to the 40's the next day. She said she tried getting a hold of hotels in the area and was thinking of going there to wait out the storm but found out that they didn't have power or water either.  She didn't know about the shelter that was set up. she also said the police car that stopped by to check on her didn't offer to take her to one, so since she didn't know there was one, she didn't know to ask. She just figured she had to do the best she could. She said we were wrong about her refusing to go, that she was sooooo cold that she would have gone anywhere if it meant getting warm for a while.  She bundled up in several layers, even wore her gloves inside to try to keep warm.  She ended up with a light case of frost bite on the tips of her fingers. She said she kept having to take the gloves off and on to do anything.  One of her neighbors came by the one night and brought her some spaghetti he had made on his grill.  He was able to use it to cook and thought she might want something warm for a change.  She said that was nice of him and that it was nice to eat something hot. She mentioned other friends later spoke of having small kerosene or other sources of heat, or even wood stoves etc.  She didn't have anything.
My brother picked her up and they took her car back to Lexington and she stayed there the rest of the week until power was restored.  They said it looked like driving through a war zone driving across KY on the parkway. Many of the trees were sheered off from the storm, no lights, etc. No gas stations for miles and miles. I am so glad he was able to go get her. I think if she had to stay there at home another night it would have been too much for her. I can't imagine how cold she had to be.

Wednesday, December 22, 2010

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.

Tuesday, December 21, 2010

HO HO HO and Bah Humbug

Its really hard to accept that this week is Xmas already.  Blink once and it was summer, blink again and it was fall, and now its the end of the year.  We are having an unseasonably cold winter and even fall.  Setting records down in the low twenties, or single digits for this time of year.  I don't like the cold.  I am ok if it is cold but dry. Meaning no sleet rain mix, or no wet snow.  Powdery snow isn't so bad.  I could do without the bitter wind though. And to be quiet honest I'd just as soon stay inside when it is cold.  I like fall. I like it better when the weather is in the 40's - 70's. 80's aren't bad. I was saying the other day how I don't like the cold, and M was telling me that I don't like hot weather more.  Hmmm.... I didn't agree.  She insists that I am miserable when it is hot.  Perhaps she is right.  I used to like hot weather.  Hot weather when I was young meant summer break. And if it got too hot, well, then jump in a pool, or the lake, or whatever is nearby.  I love the water.
But I know that sometimes I still think of myself as I was when I was younger. When I could jump up and run across the room, when I could play ball, could hop skip jump if I wanted to. Now those things aren't an option. Yes I can jump on my bike and ride.  Sometimes I ride better than I walk.  M was talking about how happy a friend of hers was about something a while back and mentioned that she was so happy she was skipping across the floor.  Somehow the subject changed to whether or not I could do that. Skip. I used to be able to.  My brain says it still knows how.  My body thinks it can.  But alas. It isn't the same body it used to be. As it thinks it still is.  So ok. I can't. Most of the time I accept what I can't do. Other times, I think it is unfair. Where has the time gone? Blink and my daughter is now 25. WTH. That can't be right. In a week I'll be 48. Pushing 50 as M's sister calls it. Whatever. I don't really care how old I am. Or whether anyone knows or not. Some people can't seem to believe that I am old enough to have a 25 yr old daughter. I think that is sort of like saying oh but you don't look sick.... I sometime feel oh so much older.
Earlier in this post I abbreviated Christmas as Xmas. or xmas. I do that quite often.  The other day I saw someones post on facebook complaining about how people need to put the "Christ" back in christmas, and how it was somehow "blasphemous" to use "xmas" - whatever.  I mean I'm sorry if someone is offended. But sometimes I think I'm offended by the extremes some people go to with religion. It's a holiday. The same people that fuss about it seem to be fine with the idea that it is also a day where we celebrate looking for some big fat hairy man with a big belly and beard that wears funny clothes wants little kids to sit on his lap and give them candy canes.  Really? How confusing is that for parents to one minute tell their kids to stay away from strangers, and not to take candy from strangers etc to then say go on sit on the fat mans lap.
I'm terrible at keeping up with this blog.  I started it as a place to keep track of my thoughts. Which is ok.  Sometimes I do want to express things and this is as good a place as any. I sign on and get swept away reading other peoples blogs. I'd much rather be a voyuer I think. Reading about other peoples lives. They do a better job as story tellers anyway. Plus I feel I get to know them. They become my friends. Much more interesting than my boring entries. Dear Diary. It snowed yesterday. Then it melted. LOL
I had my Thyroid surgery. Recovery was really no big deal.  Still look a little like someone took a knife and slit my throat and I have the scar to show for it.  That should fade in time. Other than that it was a non-event. Luckily the nodules in the half of thyroid they took out were benign. There was incidental traces of cancer cells in the thyroid itself. But not significant. Whatever that means. At this point it is wait and see. I had my thyroid levels checked after 5 weeks and they are normal. Before the surgery they were high normal (or low normal, meaning low number but thyroid was over productive on the edge of normal) now it is mid normal but he wants to check again after 3 months to see if something changes. Then watch the nodules in the right side to make sure they stay stable.
M had her elbow surgery. Tennis elbow. Don't think she has played tennis in her life. But has had various jobs with repetitive motion. That and some heavy lifting.  In any case, the surgery went well. Dr had said it would be 2-3 month recovery before back to 100%.  She has close to 95% of range of motion back. Is still restricted on how much she can lift (no more than 25lb). And on light duty at work for another month. She's the type to have trouble sitting still and not doing. So having to take it easy has not been easy for her. Also, because of her being on light duty, I've had to pick up the slack on some things. Like carrying 40lb bags of wood pellets in from the garage to put in the pellet stove. So I've had to work harder. Some things I can do no problem.  I don't carry things up stairs well.  Need one hand free for balance mainly. My problem is as much my knees - especially the left one, as anything. The last synvisc wore off after about 4 months. I'm not due for one until January.  The past week or two have been pretty bad.  It wants to give out, and it grinds.  Most painful is when it is bent and I go to straighten it.  It isn't painful while it is bent, just the straightening it up. and the putting weight on it.  Trying to decide when to plan to have surgery to just replace it.  Right now think I'm going to wait until October.  Then I can enjoy riding my bike this year.  Course might be sorry if the knee causes more problems.
Like I started to say, M seems to think I sit on my butt all day. I am a network engineer. Work on a computer all day. I do get up and walk around, sometimes move equipment around. but it is a very sedentary job. However, it can be stressful. And it can be tiring. My old job I used to travel periodically. This one not really. 2-3 times a year or less. I pull a lot of on-call. 2 weeks on, 4 weeks off. That gets old. On the plus side, if I get called, I can remote in from almost anywhere. My old job I could work from home. This one office politics won't allow it.
Within a week, my daughter and I will be flying off to visit my mom for xmas. We go twice a year. At memorial weekend, or the anniversary of my Dad's death, and sometime near xmas. Mom isn't doing so well. She's 84. Has congestive heart failure - but she looks so good. To look at her she does look very healthy. But walk with her, you see she can't cross the room without getting out of breath. She has a huge in-operable anuerysm wrapped around her heart along her aorta. Part of the congestive heart failure, her feet swell up really bad, and she retains fluid. She takes meds to take the water off, and ends up in the hospital every month or two to have fluid taken off, but they have to be careful because her kidney function isn't the best either. Too much of the meds could shut them down and she could go into kidney failure. She gets so worn out, and can sound so weak. The latest thing is that she has something that causes her problems swallowing. Her throat is sore but not like with a cold/sore throat. When she eats everything tastes bitter. She says she is still eating. But the swallowing is difficult and that she will eat something that she really likes and hopes it will taste good but it doesn't. I worry about her. Also that she is so far away. 1000 miles. To drive takes 2 days. Flying is an almost all day thing too. No non-stop flights. Unless I want to drive 2 hrs to an airport, fly to another and drive  2 1/2 hrs to her place.  Add the time to fly, and get there early enough to through security and it is a long process. This trip we are leaving from an airport only 15 minutes away. Have one layover then fly into another small airport that is only 1 hr from Mom.  Good news is that she can drive up and get us.  She still drives.  I trust her to ride with her.  She won't drive after dark, and doesn't like to drive in strange places or big cities. My brother lives about 5 - 5.5 hrs away. He is able to get down there to visit fairly often - least once a month. He worries about her too. Has talked about getting her to move closer to him.  She will have nothing of it.  As much as I worry about her being so far away, and there by herself, I see her point.  In the little sleepy little town that she lives in, she has a lot of friends.  People that care about her.  Things are different in that little town than they are in other places.  That can be good or bad. For her it is good.  People know their neighbors.  Look out for each other. People gossip, but sometimes in a good way. She has a church family. She isn't alone. If she were to move to where my brother is, she would be in a big city filled with strangers. Other than my brother and his wife, no one would really care. She says she would be bored, feel isolated and alone.  Would hate to be a burden to my brother. Wouldn't feel safe driving herself. And would become a shut in.  I think it would be the beginning of the end. But that doesn't mean I don't worry about her. And don't feel oh so far away sometimes.