MS and Moving Stuff

I haven’t had much problem with my MS since I retired.  I am able to sleep the 10 hours a night and nap for 2 hours during the day, but have energy in between.  But for a long while there I didn’t always need a nap, but lately I have no choice.  About 2 hours after I take my morning meds I am so sleepy if I don’t lay down I’ll fall asleep where I am.  Again, I am lucky enough to usually get that much needed nap.  I mentioned it to my neuro at my last appointment, and she replied that all the meds I take have a “may cause drowsiness” warning.

I finally told myImage neuro that I stopped taking the Copaxone injections.  I didn’t tell her I quit it last year.  When she asked me why, I told her because I was having trouble finding injection sites that still had fat.  The Copaxone destroys fat cells at injection sites, like liposuction.  I also said I didn’t know if it was doing anything, since I hadn’t had a relapse in over five years.  My neuro mentioned that perhaps I hadn’t had a relapse because the Copaxone was working.  I told her that if I had a bad relapse I would try one of the new oral drugs.

I have been noticing more symptoms lately.  The fatigue, heaviness in my legs and arms, pain behind my eyes, increased trigeminal pain.  The problem with my thumbs and ankles was really bad during the last little heat wave.  It was about 95 for 3-4 days.   I wonder if it’s because I haven’t been taking the injections, but now that I’m on medicare I’m not sure what disease modifying drugs are covered.  So once I get set up with a new neurologist in Long Beach I may revisit the subject.  Which reminds me, I have to find all new docs down there and should start calling those in the area to see if they are taking new patients.  Then make arrangements to have my records sent.  Neuro, GP, psychiatrist, and therapist, but I’ll take it one at a time and it will all get done.  If I worry about everything that we still have to do, I’d be overwhelmed.

We are very close to signing a lease on a beautiful little apartment.  It looks to have been built in the 20s above a garage.  It has old wood floors, a cute little kitchen with a little eating nook.  The bathroom still has the original tile and ceramic fixtures, though there arbedroome chips and cracks, I love the look. It even has a period mirror.  There are two nice sized bedrooms, each with floor to ceiling windows and little balconies where we could put a flower pot or two.  There is a dirt patch in the back that they call a yard, but Husband could take many of his favorite plants if they don’t mind us doing the landscaping and maintenance, but I will try to remember to ask at the signing.  The landlord did say we were at the top of his list of applicants.  We should know for sure tomorrow when he goes over all the paperwork.  Fingers crossed, we really fell in love with the place.

We started packing up some items, mostly books and nic nacs, and gone through closets for donation clothes and other items.  I’d already donated all my work clothes to a service for poor and homeless women to help them dress properly for jobs.  But we still have jeans and shirts that no longer fit. So we are starting to live in disarray, trying to keep the boxes straight and not put something we want or need to keep in the donation box.

All in all even with the increase in my symptoms, my health is very good.  My mood is still high and we are looking forward to this move.  There is still so much to do I’ll need to make a list: power, water, gas turned on and off, getting our DirectTV moved, setting up the computer, printer and wifi , new furniture to buy (this one sounds like fun) and I know I will do almost all of that.  It bothers Imageme a little less now than it used to because I realize Husband doesn’t like to do all that, he lets it overwhelm him and he gets confused.  I will make him take care of the simple things like calling to turn off power, etc.  And he does 90% of the grocery shopping, which I hate to do, so I’m willing to handle the more complex things like getting medical records moved and handle the computer stuff.  He’ll handle 95% of the physical move, so it seems pretty even. Once we get ourselves settled we will get Son into his own place and he can start looking for a job.

I like having Husband retired, and I love the idea of being just the two of us again after ten years.  Just like being newlyweds again!

MS Stuff

It’s been more than 6 months since I sprained my ankles.  Yes, ankleS, my right foot was a mild sprain, but the left I thought I’d broken it.  I don’t know, maybe I need to give up one of my exercises, adding the second Zumba is just too much.  I just want my ankles to last through the end of the next session.  No, that’s not true.  I hope they last a very long time!  That’s why I wonder if it’s worth the risk.  I’ll only take one Zumba class next session, and wear the braces and see how things are. DI buttons

I worry  I might have done permanent damage to the ligaments.  But I also think MS is making the healing process even longer.   Or aging.  Damn that aging thing.  Anyway, just when I need the exercise the most, and have found something I enjoy doing, karma puts a monkey wrench in it.

My thumbs are also really bad lately.  Just washing dishes is extremely difficult.  I’m going to have to cut back on that chore for right now.  I really need the family to step it up and pitch in.  Son is doing his share.  But I want Grandson to help as well.  He needs to learn to help out more.  I can’t do everything any more.  Vacuuming is also painful for me.

So I need to cut back on doing house cleaning.  Hey, a Bright Side of MS!

It’s always something isn’t it?  I have a new symptom: neck spasm.  Man it hurts.  And non stop.  Been two days like this, today being worse.   I wonder sometimes whether to go to my doc, or if I can just call her, and let her know when new things come up, or wait till I see her this summer?  It hurts worse when I move my head or talk.  So at least the family is happy.  lol  Another Bright Side of MS–at least for someone.  Ha!

zumbaWe all went out on the deck and did some transplanting of plants today.  It was nice to do it as a family on such a beautiful day.  I had to stop a couple of times and get off my feet for an hour or so, but I got several plants into new pots.  Even in pain, I can see the good stuff.  I don’t feel I deserve the pain, but I accept that it is there and there is nothing else to do but deal with it.  And I’m not too disappointed at relegating more of the household chores!  All in all Life is good.    Life can be good even if you have MS (or another chronic illness).  I’m starting to believe that.

 

(PS:  Another blogger  (http://wordpress.com/read/blog/id/29421092/)  mentioned that she was getting my comments twice.  I have to hit ‘reply’ twice before it looks like it uploaded.  Hope this isn’t bugging anyone.  Who knows when WP’ll get to that.)

Just letting people know.)

Pictures of Another Sort

In anticipation of Husband’s retirement, we are experimenting with different ways of augmenting our limited income.  Firstly, I hope my online jewelry store (http://www.artfire.com/ext/shop/studio/LSJayHandmade) will provide some and secondly, I want to encourage Husband to sell his photos.  He has been taking pictures for 35 years and I think he’s very good at what he does.  We bought his first camera while living in Okinawa in 1980 and he has had one ever since.  He’s now on his fourth camera and is still learning all the ins and outs, and so far it looks like it takes amazingly clear.  He specializes in flowers, especially in micro close ups of flowers.  Here is some of his work.

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These are not the micro close ups he usually does, but I happened to have these handy.  I’d be interested to know if he’s really as good as I think he is, or just a good amateur.

 

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Retirement and Moving

We have come to terms about losing the house and have decided we will not move to Washington state.  We’ve decided it is too far away from son and grandson.  We’ve decided though, to live in a city; the city where my husband grew up and where he still has a number of friends.

My husband plans to partially retire this year after he turns 63 in May.  He can collect social security then, and still work (as long as he doesn’t make too much).  It’s a scary prospect, this move.  Out of 35 years of marriage we’ve only been just the two of us for 3!  LB

My fears abound with this move.  All the worries.  What if we suffer from empty nest?  Hopefully we will still live near to our son and that won’t be bad.  What if we get on each other’s nerves?  Never mind ‘what if’ — what will happen when we DO annoy each other?  It wasn’t long ago I was certain I was going to leave my marriage and my family.  I worry that when its just the two of us, some things will come to the surface that have been long buried.

Then there’s helping our son get settled somewhere.  I already know he would prefer to stay in this area, but he won’t be able to afford anything by himself.  It’s just too pricy.  I would prefer, and hope he will agree, to move into the city with us, at least for a while.  Not living with us, but he could afford a small studio on his own, even if he needs some help with groceries or gas.  We still have money left over from my catch-up disability pay, which we will use to make all the deposits and get utilities turned on for us and our son.

I will be going on Medicare in July, so our move will take place after that.  Husband will be 63 in May, and start working part time where he works now, and then when we move, he will find something in the city.  We will need to get him on ObamaCare for a couple of years until he can get Medicare, I hope it’s not too expensive.  I will need to start looking into it.

MS logoThen with me going on Medicare and moving, I will need to change doctors.  That will be hard.  I’ve had the same neurologist for 7 years.  I really love my therapist, and I know a good psychiatrist can be hard to find.  I will ask each for referrals if they have any, but this whole thing will be a huge change.  Then there’s the issue of what Medicare will cover.  It is important for my disability that I keep seeing my specialists on a regular basis, so establishing myself with new docs is important and uppermost in my mind.

I like the idea of living in the city at this age, with everything close by.  Plenty of bus and train service, so there will be little driving.  We will be able to give one of our cars to son.  There is an active artist community where we will be living, so that is exciting.  Plus the comedy playhouses will be an easy drive for me and I can delve into stand up more easily.  I plan to find a Zumba class and maybe Tai Chi, as well as a comedy outlet.  I do  worry though that all my new independence will wither with the constant oversight of husband.  That he won’t like me doing comedy or doing anything without him.

zumbaSo, that gives me about 6 months to finish my novel.  It hasn’t been going too well the past week or so, though I worked on it today, I’m only at 27,200 words.  Past the midway point, though, and things are moving in the right direction.  My antagonist is moving on my main character, and my main character, Zeke, is starting to realize what he’s up against.  There are still a couple big scenes to work out, but I do have the ending fairly well thought out.

I just need to discipline myself to write every single day.  It’s so easy to come on here and read all these interesting blogs about fascinating things and amazing people.   There are so many great blogs; too many for me to read, and far too many to comment on each.  And then I will need to keep blogging about the move and getting settled, but I feel it coming to an end this year, though that’s a long ways off yet.

I’ve been pretty good about staying off Facebook, which is one huge time suck, for very little DSCF4215reward.  I do use it to push my jewelry, but I try to stay off it otherwise.  I do have 245 followers of my jewelry page, so that’s something I want to keep working on, but if I don’t have a single sale by the end of this year, I will close up shop and donate my jewelry somewhere or something.

I never thought my life would change so much at this point.  It’s all becoming very good and I don’t want to upset the apple cart.

 

The Lessons I’ve Learned About Getting Old(er)

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Grandpa’s death certificate

First, that I get to.  As they say, it is a privilege denied to many, and I am beginning to understand that as those around me die.  My friend who died last Spring wanted more than anything to keep living despite the facts piled against him.  He tried every treatment available and went to numerous doctors looking for a different diagnosis.  He made the best of his remaining days doing the things he loved and saying goodbye to places and people he loved.  He was only 62.  He fought death for almost ten years.

Second, I can say things I’d never have said in my youth.  In short, you can tell the truth.  If someone does something stupid in your presence, you can tell them so.  While I haven’t done this exactly, I have written some letters to various companies and complained about customer service, where before I would quietly accept their inadequate answers.  As I get ever older I will be able to say more and more outrageous things.  My grandma, attending the funeral of an unpleasant acquaintance, listened to people sing her non-existent virtues until she could stand it no longer.  Family legend has it that grandma finally stood up in disgust and said something to the effect, “She wasn’t the saint you people make her out to be.  She was mean and bitter and unpleasant and the only reason her presence was ever tolerated was out of common courtesy.”  With that she grabbed her hat and purse and walked out of the church.  I don’t know whether she later regretted her words.  I hope not.

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Family relatives in their hey day of perfect youth. They were trapeze artists with a small circus.

Third, I no longer care so much about how I look.  I understand now how older women tend to gain weight.  Why not?  If you love food, you can eat (hopefully within reason) the things you enjoy and not worry about fitting into that Little Black Dress for the next party.  You don’t have to have the latest fashions. A huge relief for many, I should think.  It’s exhausting (not to mention expensive as hell) shopping every season for the newest, latest, best.  You don’t care so much about wearing white after Labor Day, or having your shoes and bag match.  Most of these things were never important to me, but I do find that I don’t mind going out without make up, or if my hair isn’t ‘perfect.’  I’m less worried about ‘looking nice’ and more about ‘being comfortable.’  I haven’t worn heels in two years.  In fact, if I tried now, I would be very uncomfortable.  I don’t worry about ‘bad hair days’ any more.  In general, I just don’t care what someone may think about how I look.  If someone has a problem with my dress, that’s on them, not me.

Fourth, if you are lucky enough to retire you find you finally have time to do the things you want.  Although you probably don’t have the money to do some of them (like travel), you do have the time to finally learn to knit, do crossword puzzles all day, or write the novel that has always lay hidden.

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Husband and his best friend circa 1968

I have learned to enjoy each day.  I have learned time is precious and therefore spend your time doing the things you love.  You have more freedom, not worrying so much about what other people are thinking about you.  At least these are the truths that I have come to understand.  I think for the most part they are the truths we all learn.

I started this blog shortly after my 50th birthday and unexpectedly retired due to disability.  I was searching for meaning in my life.  This blog, anti depressants, therapy, journalling, and a little Buddhism have helped my find my way.  Now, my 53rd birthday next week, I am more comfortable and happier than I ever was before.  I have mourned my youth with gut wrenching tears and have been able to move beyond them.  I learned that regrets are some of the hardest things to accept and instead of accepting some of mine, I decided to make some of them reality.  The people here at WordPress have encouraged me along my way and supported me during my rough patches.  That’s the last thing I’ve learned about getting old; you need good friends.

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My first photo

Thank you, my many friends, for your support in helping me reach this point.  I hope from here I will spend less time on “Me Stuff” and more posts about the world and our place in it.  I hope to publish a book of my haiku and have a bit of a start.  Maybe I’ll… picture, animate, picturate, photograte, punctuate (I can’t for the life of me think of the right word.  Damn memory) add my own pictures to the book.  I also hope to get my novel finished at last.  That’s another thing I learned as I grow old.  Do the things that matter to you first.

I Wish

I wish I was working.  I wish I wasn’t going to lose my house.  I wish I never bought the house.  I wish my doctor would write a letter releasing me from DI.  I wish I hadn’t freaked out and left my last job. I wish I knew what to do.  I wish.

But wishes are for children blowing the fluff from a dandelion.  Wishing doesn’t help me prepare some sort of plan to become gainfully employed despite the world’s efforts to keep me from it.  You’d think 25 years experience would be enough, but it’s not.  They still want you to have a degree.  I did have someone contact me about working, but when I called all they were doing was trying to push you to go to school.  Weird.  Why place an ad that looks like a job ad, only to try to sell me a degree?  I should’ve applied for the job at the funeral home.  Seems stupid to me now that I didn’t.  Why is it only stupid in retrospect?  Why wasn’t it a stupid thought when the job was available? 

I’d love to do something other than secretarial work, but I don’t know how to find other work.  I did answer a couple of ads for bakery workers, shelf stocking for Kellogg’s, grocery store clerk.  But my skills don’t seem to translate to that type of work.  So, today I am going to try to figure out a better way to sell my skills.  I’m open to suggestions, but I’m starting with doing my resume over in a different format.  First I have to figure out what that format is.

This is my life now.  A constant worry about money, and I kick myself everyday for the stupid choices I have made.  I wish it could be different.  I’m trying to change things, but it feels like I’m failing.  Another thing to try to accomplish today is call a debt counselor for an appointment.

I wish my life were different.  I wish I could change it.  It seems all I can do is try, but what happens when trying is not enough?