Posts Tagged ‘RA’

DSHS Rears It’s Head Again!

November 16, 2014

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Mom on her 90th birthday.

Just when I thought all was pretty much taken care of with Mom’s stuff; a letter from DSHS arrives in last Saturday’s mail.  they sent a form about asset recovery for Mom’s medicaid.  It is a simple form, but I always feel it is a more of a minefield.  I made a copy of it to play around with before doing the official one.  I took it over to Dave Gagley to check for me – I don’t want to answer questions they didn’t ask.  We spent some time figuring out what I need, what else I need to do, etc. because they are going to want the money in her checking account.  I don’t begrudge them the money because they did so much for Mom, I want to be sure my ducks are in a row and everything is properly done.

He is going to file Mom’s will for safekeeping, not for probate.  So I had a list of things to bring him to put this together.  He also suggested going to see our new accountant about final tax return and what is needed.  I made an appointment with AD  and his opinion was that it wasn’t necessary to file because she had minimum income.  I went back to see Dave on Friday to give him the stuff, plus to call AD to explain what he needed, I wasn’t too clear because I don’t quite understand it or the ramifications.

So he and AD talked and settled it between themselves – a bonus for Dave is that AD is looking for an elderly attorney as a referral for his clients.  It’s possible Dave will refer clients who need a tax accountant to AD.  Works all around.  It was such a relief to have their help with this, it has been a source of tension and stress for me all week.  Dave is going to write a letter to DSHS to let them know there are still some bills – his and AD’s still outstanding, so the account isn’t ready to close yet.

I am hoping this is the last piece to the whole puzzle and it can be put to rest.  It has seemed as if there is a spanner in the works cropping up and making me feel stressed; how glad I am to have had Dave to consult and help me with each one as it appears.  I get antsy and  uptight when it comes to government, they can make life very difficult without even trying.

Tomorrow is my radio show, thank goodness the website is up and running and I think I have email.  Last Monday Vickie Bergquist was my show, it was fun because she came to the studio with me for a face to face show.  She was nervous, later said she had fun and I put her at ease.  Not sure what I did, but I am sure Benny helped to calm her nerves too.  This week it is just me.

I have had a lot of good comments from friends on how well it sounds and how polished.  Maybe it is time to take off the training wheels.  I am more comfortable with it, though not quite sure it is real.  It’s not a feeling I can put into words, maybe more of an unreal quality because I never thought I would be doing this.  I had some advice from a marketing friend, since I don’t have a sponsor yet, he suggested using my promotional marketing business as my sponsor.  So we’ll see how that works tomorrow.

It is somewhat odd to find I have trouble remembering what I did during the past week.  I know I was busy and not able to take naps in the afternoons.  I need to check my calendar.   I have been sleeping pretty well at night, sometimes it’s hard to wake up early even though I had gone to bed around 9.  I feel I have a bit more energy at times, some days more than others.

Even tough we have had sun most of the week, it hasn’t been all that comfortable to be outside in the wind – it’s really cold to me.  I know we aren’t having Arctic Chill temperatures, but these are cold enough for me.  Yes, I am a bit of a wimp when it comes to extreme temperatures either way.  We have been having low 40’s during the day and some below freezing nights.  I know other places are colder, snowier and more miserable, this is where I live and it’s more than enough for me.  I have served my time in the  eastern part of the U.S., that’s why I appreciate living here.

Cold is not always kind to joints, at times I feel as if I am slowly being mummified, my legs are as flexible and the other limbs aren’t quite so able to move that well.  The bandages feel as if they are tightening around my middle so I have more trouble bending – or is this all my imagination?  My left side rib is still sore from the tumble, I am curious to know why it seems to travel to different sections and ribs on that side.  Not sure what’s happening but have decided to see it as interesting rather than get my knickers in a twist about it.  The combination of RA and my body have kept me wondering what is happening for over 40 years.

How about that; I have written 900 words not saying much about anything.

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Past My Comfort Zone

July 20, 2014

I have started a new project, though I have been thinking about it and wanting to do it for the past few years.  So why haven’t I done it before now?  Great question!  I think it has mostly been –  what I am beginning to understand finally – a result of my core belief, I am not good enough.  I have seen myself in terms of what I don’t have – a degree, a specific talent, training – I can go on and on.  I was also concerned about who would be interested in what I have to say, that no one would tune in to me.  All those insecurities running around my brain. Strangely enough, about 5 weeks ago I calmly wrote an email:

  I have been wanting to do a radio show, not quite sure how to clearly define it.  I have had Rheumatoid Arthritis for 43 years and in the last few years I have been thinking in terms of finding the gifts in it rather than seeing myself as a victim.  Since February of 2010, I have been writing a blog called www.giftofra.com,
wanting to share my experiences and what I am learning can help others.  I am in the process of writing an ebook with a collection of blog posts about RA – I plan to do one about dementia since I have been dealing with my Mom’s for the past 3 or 4 years.  I have spent most of those 43 years dealing with it on my own and it would have been great to have someone with more experience to consult.  In some way, I would like to be that person – I am only an expert in my own RA.  
      I probably need someone to help me decide the focus and audience for a show – I have been thinking of calling it Finding The Gifts.  It is scary, yet I have been thinking about it the last few years while I have enjoyed listening to KKNW.  There is a part of me that thinks “Why would anyone want to listen to me?”, I know that is the no part of me.  If I don’t actively do something about it, it will always be something I wanted to do but never had the courage.
I had a really nice email in response:
My name is Brian Egge with KKNW.  Erik Krema the Operations Manager at KKNW gave me your contact information.  I am sorry to hear about your condition, but it sounds like you have made the best of it.  I think it’s very admirable that you want to share your experiences with others that may have the same condition and help consult them.  Erik and I would love to hear more about yourself and your condition to see how it will relate to the KKNW audience.
About 2 weeks later I went over to the radian station to meet with Brian and Erik.  It was a lot of  fun and they were terrific.  What has surprised me through this whole thing is how calm I am – I wasn’t worried about my looks even though I am heavier than I have ever been.  I just thought, this is who I am at this moment and I am fine with it.  I didn’t have the butterflies in my stomach or any of that, nor did I feel insecure and see myself as not having much to offer.  They asked questions and I had no problem answering them, plus I put in a few bits myself.
I was amazed when they said I had the timbre and voice for radio – I told them I spent a lot of years answering the phone and having people ask if my mother was there – the timing.  They really wanted me to come and do a show for the station.  All I had to do was tell them when.  Then I got the fluttering inside.  I must admit, I was stunned and it hadn’t really seemed real or sunk in at the point.  WOW!  I had no idea.
Now, the sticking point is getting sponsors to fund the show – no way I can afford it on my own.  I have talked to a couple of friends and they are interested – I just have to understand how it all works.  I told them I would start a list of questions – I always have questions, just ask my clients.  Interestingly enough, I had started a notebook about my radio show 2 or 3 years ago, that made a start for right now.
Later I had another email from Brian:
Thanks for the email.  Well Erik and I really do believe you would be excellent as a radio host on KKNW.  Yes, I would be happy to send you some information to share with your people of interest for sponsoring.  I will put something together and try to email it to you by no later than Monday afternoon.  Does that work?
Does that work?  You bet your ass it does.  This is new territory for me, so it is a bit confusing at the moment.  I want to meet with them again to find out how it all works.  It has finally sunk in and I have been thinking about it and what I would do.  I had some ideas for music I listed in my notebook, then Friday I was listening to my Susan Boyle cd in the car and the last song is “This Is The Moment” and it hit me because it said a lot of things that described how I was feeling.
It is less expensive to do it outside 6 to 6 weekdays, but I have decided to aim high and do half an hour on a weekday – shoot for the moon and I will at least land on a star.  Once again, I need to talk with them about it.  I know there are a lot more things to do, I am working on what I know to do right now and see what comes next.

I Am Blown Away!!!

June 29, 2014

This is my 257th blog post – with 4 drafts – and what is more amazing are the 102 followers I now have.  That is so amazing!  I was so pleased with 25 followers and now it is 4 times that amount.   I am very grateful for all of my followers, I appreciate the comments and to know there are people who are interested in my blog.

On the slight downside, I was getting a lot more spam, but I know they just want me to approve their comment so it will show up in better stats for them.  It all gets deleted, so they have wasted all that time and energy for nothing.  Recently it has slowed down to only a few at a time – I am not interested in house appraisals and inspections in Maryland, any more than all the ones from people selling cars.  Give me a break!  I don’t write anything about any of those.

As I look back over all the posts since February 2010, I started out with mostly writing about RA; then wrote at times about Ike Pono and what I was learning about myself.  Later on I wrote about my Mom and dealing with dementia and about some things going on that have nothing to do with any of the other things.   Yet, all of it affects RA and my state of mind; how can it not?  I also have learned that it is important to find the funny side of things – if I don’t laugh about it, I go nuts.

I started thinking about all the years I have had RA, all the drugs, tests, studies, procedures I have had.  When I am in the situation, odd thoughts come to me that are a bit funny.  It isn’t as though I sat there and said to myself “What’s funny here? or what does this remind me of in the past?”.   Things just came to me.  The times I have been in the hospital, I would keep a pad with me to write down my experiences.  I wrote a journal for several years and I had requests to be put on my list to send it to them.  I realized that writing helps clear things out, help me see things a bit more clearly and there is something that compels me to write things down.

Before I came back to Seattle to live, I traveled a lot with my husband and also by myself.  I would keep my journal going and at one point, I started recording it on a cassette tape.  I found someone to type those tapes out for me – when I read the typed piece, I realized I had left out things.  I may have been a little more conscious of editing because I knew someone else would see it.  People used to tell me I had such an interesting life – reading my journals didn’t have the times of pain, depression, frustration, etc. I had at the time.  I didn’t whinge because I was tired enough of it myself, I didn’t want to write about it.  Besides, who wants to read that?

When I started this blog, one thing that was important to me was not to whinge (moan and complain) because I wanted this to be a positive blog.  I’ve read other RA blogs and they tend to talk more about how they are feeling, what isn’t working, what is – I wanted to have more ideas and solutions.  I know this kind of blogs work for some and I am glad they do.  It’s just me.  I started with the Connecticut Chapter of the Arthritis Foundation doing a support group.  When I was having problems, it was good to have other people understand.  But it felt too focused on me and how I felt, I wanted to do more with people and turn outward than continually inward.

I was asked to be the Speaker’s Bureau Coordinator and later a Self Help Course  instructor and trainer.  I really enjoyed those because I interacted with people, found confidence in speaking before people and seeing something positive happening.  I usually talked about the basic fact of Arthritis – like all things, it was personal rather than just cut and dried facts.  When there wasn’t a lot of time, my stories were the first to go.  I received so much positive feedback and it made me feel so good when someone told me I had helped them so much.  I had felt things were just negative about having RA, here was such an opposite view that surprised and pleased me.

It has not only been with the Arthritis Foundation this has happened.  I have had several people tell me I am their hero.  WOW!  I was and am just being me, yet something spoke to them.  I often wonder how many  I have helped and will never know about it – but I have decided it doesn’t matter, I’m not supposed to know.  I think we all inspire people as we go along our daily life without knowing it.  To me, that is when we are most effective.  I used to think if somebody didn’t mention it, no one noticed what was happening.  But I would remember how many times I noticed something but didn’t say anything to the person.

So, to all my followers, you are the best and I truly appreciate each and every one of you.

A Short Reunion

June 24, 2014

As a result of my slide, I have become reacquainted with my cane.  It took a little practice, but I’m doing pretty well, not tripping over it so much.  It has been hard to walk since Friday afternoon and the cane has helped.  It was not my fondest wish to have this reunion, on the other hand, I am glad the cane is there.  I have had it in my car trunk for the past two years, occasionally I use it if I am not sure of the  of the terrain or if there will be a lot of people.

Black_Cane_T_HandleIt’s not a fancy cane, I bought it at Rite Aid for not too much.  I made sure it was adjustable and during out-patient rehab I asked the therapist how to measure to make sure it is the right height.

I haven’t done a lot of exercising, though Saturday I  went in a couple of places.  I was tired when we came home, so I had a lie down.  Eddie wanted to walk by the river in Renton so he could check out the flight line for the 737’s – I was quite happy sitting in the car reading.  Then we went to Panera for coffee, about the extent of walking.  Yesterday I went to see Cheryl, my chiropractor.  I explained what happened and how it had been feeling, so she worked on different places that connect with the knees.   I had an Apple One To One at 11 to work on my book.  I seem to have found something that seems to stump them a bit.  Both Larry and I learned a lot about iBooks Author – says he likes a challenge.  I told him I was ready to forget the whole thing because it has driven me crazy – but I am not about to let technology win.  I decided to go home, have something to eat and have a lie down – sometimes it is smart to do that after an adjustment.  I am glad I did because I was a bit more tired than I realized.

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One of the aspects of  RA and pain is how varied it is – with this situation at the moment, the pain has been different every day.  Friday it was sharp pain in the outside of my knee, yet Saturday it felt as if I had a tight clamp below my knee.  Sunday the clamp was in the middle of the knee and at times there was a sharper pain in the middle of the knee.  Yesterday the clamp was around the knee and today the clamp is mostly gone but the outside of the knee feels as if someone is hitting my knee each time I bend it.  That is one thing that really baffles me about RA – it is never the same from one day to the next.

Today is doctor morning, I am going to see my primary doc for a check up – he has been pleased with my progress, but not sure what he will say about this latest incident.  I don’t plan to do any “running around”, just buy some cookies for Mom for tomorrow.  She was alert and doing well last Friday, though I noticed she was in the wheel chair.  Apparently her knee was bothering her, so they use the chair.  Otherwise they make sure she uses the walker so she won’t forget how to walk.

LATER

I saw the doc and he was pleased with me – not necessarily the slide but my blood work, blood pressure, etc.  Unfortunately he weighed me and I am 15 pounds heavier – Ye God’s and Little Fishes!!!!  I suddenly realized the weight gain a week or two ago – I can’t believe I let it happen so easily.  I have spent a lot of the last few months  working a lot at the computer and not getting very much exercise; now the knee as well.  Yet I have noticed I don’t eat as much because I get full much faster and I opt for fruit for dessert at night.

I went to the store for Mom’s double stuffed Oreos and came home – I am noticing my knee is now on the side, a little below the joint and it feels like badly bruised bones.  Cheryl always says it takes some time for the body to integrate whatever happens and the next day may be uncomfortable.  I have an open house at Breakfast Club – I am hoping things will be more comfortable in the morning.  Afterward I will go see Mom.  This is not the time to put up a facade of “I’m doing fine” because I’m not.  It has worn me out and I am dragged out tired and not always sleeping well; I have trouble finding a comfortable position at night and walking is not particularly comfortable either.

I know I will come through this eventually and be more comfortable – it gets old very quickly to be hampered like this.  I have a quiet week and don’t have much on the calendar because I know rest is important.  I dealt with many other times like this one, though it doesn’t get easier and I haven’t “gotten used to it” either.   However, it doesn’t last forever, just often feels as if it does.

THIS TOO WILL PASS.

Working Smarter

April 22, 2014

In February 2011, I had client ask for several quotes on short notice.  I worked my tail off for four days straight and finished before the deadline.  However, in the process I really wrecked up my right shoulder and was in such pain – I kept thinking it would soon relax and right itself, but it didn’t.  Not only was it the ice pick in the back of my shoulder, it was the stiff neck and very sore and inflamed shoulder joint.  To be honest, I was a mess.

That began the most intense three years of my life.  I started seeing Debye for massage for the shoulder pain and found it hard to do anything for quite a while.  I hurt so much and had trouble sleeping at night – not one of my of my better periods.   I started doing better after I began massages with Debye in May or June – way too long to get help – and then things began to really show up with Mom and dementia.   Around  July and August was the time when I couldn’t leave her by herself any more.  It was a very difficult time because I was recovering from the shoulder and it meant I couldn’t go out any more.  By December I was way past overwhelm and far into over my head.

I waited to long to find help – I kept thinking “It’s not that bad” but it was.  I was brought up with “Don’t ask for help, don’t bother or burden people”.  It finally hit me – I had been doing that all my life, especially with RA!  I remember talking to my sister Ellen on the phone around that time; I mentioned the Don’t ask for help thing and she had three words for me  – Ditch it, Girl!  She knew exactly what I was talking about, all three of us had been doing it for decades.  So I asked for help from the Alzheimer’s Association and finally had the help I needed.

February of 2012 I broke my hip tripping over my Mom – that sent me to the hospital and rehab for 8 weeks with another 4 in outpatient therapy.  By that time, my doctor, my family, my friends were really worried about me.  The therapists at rehab told me if I went back to what I was doing, I would be back in rehab permanently.   I realized I couldn’t keep taking care of mom without some major help.  I had arranged caregivers during the day so I could get out for a few hours a week for a break, but it was also time to think seriously of long-term decisions.

I went through paperwork to enroll Mom in the Providence Elderplace program – they would take care of all her needs and provide caregivers when she wasn’t at the Center.  It was good for her to go to the Center and be with other people – all the staff there is wonderful with all the people.    Also, her new doctor, PT, OT and anything else she needed was there.  They helped me find a really good adult family home for Mom because she was needing more and more care.  In October 2012 we moved her there and it was just the right time.  She was still able to socialize, any longer and it would have been harder.

More paperwork, then even more to apply for Medicaid – by that time I had gotten her checking account down to $2000 and sold everything to pay her monthly bill for Providence.  At the same time, we were applying for a loan and vast amounts of paperwork for that.  February 2013 Mom was approved for Medicaid but it wasn’t until the beginning of June when the mortgage went through.  Then 4 or 5 weeks of kitchen remodel for a wonderful kitchen.  So many other things still to do for the house.  I have been trying to sell the furniture so we can have our own things around us, but not much luck.  I don’t know if I just don’t know how to do it or if something is holding me back.    Plus, so much cleaning out!

February of this year I past the 2 year mark of breaking my hip.  My rheumatologist said 70% people who break a bone will break another one within 2 years.   I was determined to be in the 30% and I made it – no falls or broken bones since the hip. So here we are in 2014 and it feels like a brand new start.  I have decided to move our furniture upstairs and my parents down to the basement.  We need to paint the living room and I want Brad to create a new mantle with crown molding.  it has been raining so consistently I haven’t had enough clear days to move furniture and not get it wet.

So what does all of this have to do with working smarter?  I had a call from the client I worked with 3 years ago when I spent four days straight on her quotes.  I had a week to update them and this time, I paced myself over the week.  Yes, it meant I worked a lot on Easter but I wanted to be able to finish on Monday and feel human.  By George, I did it!  I took my time, took breaks, went out to do things and didn’t allow myself to get antsy in the that “Got to get it down” mindset.  She has a board meeting today where she will present i – no idea if the board will go for it this time or not.  They vetoed it three years ago.

So here I am, 3 years older and a whole lot smarter and wiser.   I have been doing a lot of quotes and very happy to report a lot of them have turned into orders.  I am surprised to look up and find my life has changed a lot from Feb 2014 – I’m not sure how it happened, I know I have changed a lot as well.  I am better at asking for help, knowing that when something comes up, I can handle it, especially knowing I have friends and colleagues I can turn to for help.  If it hadn’t been for Dave Gagley and all his help with Mom’s stuff, I would have been in a rubber room.  So many people are willing and happy to help, now I have ways to help other people when they are dealing with some of what I have been doing.

The hardest part is going to see Mom twice a week at the adult family home.  She can’t really carry on a conversation in worlds I understand, though it is in a very conversational tone – she understands it but the circuits between her brain and her mouth have too many shorts now.  I read to her, take my iPad to play music she likes and of course, she loves the chocolate and cookies I bring every time.  I don’t ever want her to think I have abandoned her, so I visit and enjoy what I can with her.  She is usually glad to see me, whether she recognizes me as her daughter or just a familiar presence.

Why Do I Have RA?

April 20, 2014

That’s a very good question, one I haven’t quite  understood after 43 years.  I talked to a medical intuitive a while back and she told me it was only my energy; I was hoping there was also someone else’s energy that could be cleared.  So it is all me – wonder what caused me to decide to experience it in this lifetime.

There is a quotation “Things are not done TO you, but FOR you”.  Well, that one takes some pondering – something I have spent a long time doing but not  really reaching any conclusions or answers.  Does that mean it is karma in some form, balancing out something from a past life?  I believe I have had past lives, though so far I haven’t remembered them myself.  Am I supposed to – is it necessary for this time on earth?  Sometime s I feel I have more questions than answers.

Is there something about my life that is overwhelming and I don’t know how to deal with it?Am I reluctant to take responsibility for things?  What things would that be?  Or is it for protection so I don’t have to deal with certain things “because I have RA”?  I realize I look at everything in terms of RA.  I see things I would like to do, but then see the physical obstacles that could prevent me because my joints aren’t always flexible.  I felt that way about riding the Duck, the steps were a little steep and somewhat difficult to navigate, but I went up and then back down.  Sometimes I am afraid to try – in case I fail and can’t actually do it.

Oh my, I can see I set myself up to fail by not giving something a try.  Part of it comes from feeling clumsy and awkward; I would rather not put myself in that position.  I also realize I am limiting myself – that I have put those limitations on myself.  I have felt clumsy and awkward most of my life, I was the overweight (not that much but enough) middle child between two slender sisters.  I don’t really know how it feels to be thinner.  I lost about 35 pounds when I was in junior college; now I realize I didn’t really believe it or feel it was really me.

Enough about that – it is the past and no longer something I want to focus my energy.  What just occurred to me is that RA may be possibly part of my Life Lesson and Life Purpose.  Maybe these are things I want to heal in this lifetime.  I was about to say “I think”  instead of stating it because I have always been like that.  One of my Life Lessons is standing up for myself, speaking my truth – at this point there isn’t an “I think” about it.  Another is taking back my power – what a wonderful discovery to realize I do have power when I always thought before that I didn’t have any.  What a concept!

I also realize I have had a very negative view of RA – it was done TO me.  I was an innocent victim sideswiped by RA – don’t think I can see it that way any more.  I have been writing about the gifts in RA, a much more positive view than in the beginning.  Anything to do with past lives, Spirit, etc. was not talked about because people who did were weird.  Heavy duty hocus pocus, woo woo and goofball stuff.  Yet that goofball stuff has really helped me, to understand a little better and also to take personal responsibility rather than continue seeing myself as a victim.

This seems a collection of random thoughts to me – I’m not sure it has logic or continuity to it.  As I write, thoughts come to me and I write them down.  It is one of those t imps where I am not sure where it is leading.  I admit to having to stop and wonder what to write next, then a thought comes and I start writing again.

I just thought of Louise Hay and what she wrote in her book “You Can Heal Your Life”.  She said that when you truly love yourself, things will sort themselves out – my words.  I have been focusing on two major things for quite a while – Loving Myself and Life Purpose.  So much of what goes on is a result of my thoughts and as she says “It’s just a thought and a thought can be changed”.   Also I have read and heard that what I am experiencing now is from thoughts not very long ago.  The problem I am having is recognizing what those thoughts are that continue RA and what the positives are to replace them.  I know a lot of those negative thoughts have been there for a very long time and it is hard to recognize them.

What surprises me is that my Mom’s dementia has brought some of the programs into the light so I can recognize them.  Then I realize how I have been operating with them all my life without knowing it.  I may not know yet the “Why” but I am learning ways to see what has been happening all my life; plus what and how I can change thoughts that once served me but are now invalid.  I am slowly creating new positive thoughts and patterns for this stage of my life.

Seeing Mom

February 23, 2014

Some days it is hard to visit my Mom as the dementia continues to take over her life.  I sometimes don’t recognize her as my Mom sometimes – who is that old woman?  But she stays essentially my Mom, the woman who gave birth to me and raised me with my two sisters.  She and my Dad did a great job of making me (I won’t speak for my sisters) feel loved and wanted, taught me integrity ( my sister Ellen feels they gave us a great gift in that, I hadn’t thought of it before and I am glad she said it) as well as honesty, respect for other people and their property.  They gave us discipline too – when they threatened with “warming your fanny”, I knew they would carry out the threat.  They always felt kids needed to have boundaries and they would test those boundaries to make sure they were still there.

I saw Mom on Friday and she was doing well, alert and aware.  Maybe it was sitting at the dining room table instead of the recliner with a throw over her that made the difference.  My neighbor Delores called in the morning and asked to come with me to visit Mom.   She took some sugar-free chocolate and a mandarin orange for her – I took the cookies just in case.  We did have a nice visit and I think I may be getting more comfortable about just seeing how it flows.  At one point I read some of Candy’s new book and Delores really liked it – so I have lent her my copy for her to read.  She also thought “The Translucent Heart” was good as well and I lent her the pages I printed so she could read the whole thing.

I had a long email from my sister Candy the other day; she was writing from her perspective as a daughter living many miles away.

 I feel I can really only communicate from the other side of the veil now. Strange to think that all the things I used to be able to do for her are useless now. No phone conversations, no books, only cards and toys and treats–and who knows what gets through from this side of the veil. I think we have each taken our turn with her process. My Sunday night phone conversations took us through memory lane, then deciding what to do with certain precious family heirlooms (part of the reason for my long list), and then through the disorientation and waiting for the train, which was always a time of reassuring her it would all be fine, and that she would find Daddy and Josephine and friends and family on the other side, and that her daughters would eventually come to join her. 

I also think about our different experiences of Mom in various stages of life and from our different perspectives. As the youngest, I got to know a mother who began to gain self-confidence when she started volunteering at the airport and hooking rugs. She told me that she had no self-confidence before then, even with all the love she shared with Daddy. I think I would have been around eight or ten when she started volunteering at the airport, so the two of you would have been either out of the house or migrating out of the house into adult lives just as Mom was getting some confidence and perspective on herself. I got the benefit of being around in my twenties, too. I could visit Mom and Dad quite often, without all the holiday craziness. Just being there, yet even at that, still not that often. But I saw her in happier times when we were all healthy and independent. 

I often wonder what Ellen’s perspective of growing up is; as the oldest, she saw two join the fold and I’ve often wondered how it felt to go from the only child to an older sister.  Mom and Dad were learning about kids when she was born, so when I came 4 years later, they were more experienced.  By the time Candy came 6 years after that, they were much more relaxed.  It is fascinating to realize how growing up with the same two parents can be so different for each child.

Some of the early childhood training seemed to be about being self reliant; don’t ask for help, don’t bother people, do it yourself.  In many ways that is a good thing, but I realize now that is how I dealt with RA from my diagnosis – not the best way to do it.  But that was my subconscious training, along with not complaining, or at least, not too much.

So many people would tell be I have such a positive attitude about it, plus how I do as many things as I do.  My first response is that I didn’t think I had a choice, I had to do something about treatment for RA.  As for the positive attitude, they had no idea how depressed, discouraged and crabby  I could be only Eddie bore the brunt of that.  Maybe I hid behind a positive attitude, after all, I got a lot of positive feedback.  People would tell me they admired me and how well I do with RA – now that I think of it, maybe I thought it was the one thing I was successful at doing.  Is that why I let it become my identity for so many years?

I have written before how Mom’s dementia has helped me see much more clearly my childhood programs carried into adult life – real gift, though uncomfortable at times.  I am finding that gift is continuing as I become more open to seeing the truth rather than my perception of the truth.  Maybe that is part of Mom’s purpose in this lifetime.

The 2nd Day

September 1, 2013

I planned to write this on Monday or Tuesday, amazing how things get away from me.  I had two order from clients and 3 others I am working on – I don’t remember a time when I had this many projects.  That’s where I have spent my time as well and creating the design for Eddie’s Round Up.  Then seeing Mom twice a week, doc and infusion morning Thursday and meeting a client for lunch afterwards to sign the order form.

I was telling my rheumatologist about last Saturday at the Tournament and how pleased to find the after effects weren’t very bad.  I have noticed over the years that when I have done something major (sometimes not having done anything at all) I find the day after is often pretty good – I have even had ones that were wonderful.  But there is something about the 2nd day that I have been known to crash, to be stiff, sore and miserable.  What is it about that 2nd day?  Maybe lactic acid has built up in my muscles.  What I do know is I have to wait to see how I am 2 days after the event to see how well I am doing.

I was pleased to find I was doing  pretty well Sunday – well enough to start trimming the little forsythia by the ding room window.  It had been trimmed when John and his crew took out the wisteria, sticker bush  and a few other things.  It has since sent out long branches that got to a point that I couldn’t see out the window very well.  I was careful where I stepped and did quite well, though the lower back wasn’t all that happy.  Eddie came out a little later with the big clippers for the thicker branches – together we did a good job of trimming it back.

Monday was the 2nd day and I was doing rather well.    A little stiff and sore, good thing I had an adjustment with Cheryl and a massage with Debye that day.  So I did well after seeing the two of them and just had to see how the 2nd day of the forsythia trimming would go the next day.  I was pretty good, a bit stiff in the shoulders but otherwise better than I hoped.

I remember the last weekend of Ike Pono, Saturday was Warrior Games.  I knew I had a choice to participate or just use RA as an excuse not to do anything.  I decided it was go full tilt or nothing and deal with any consequences afterwards.  I went full tilt and I was stiff and sore the next day – it does happen that way sometimes.  I was a little late on Sunday and not moving too well – I explained I decided to go full tilt and deal with repercussions later.  I had a really nice compliment from Bruce – he told me “You are someone I want in my fox hole because I know you will have my back”.

The most frustrating time is when I haven’t really done much, just taking care of myself and suddenly I am hurting and miserable.  What happened?  Did I do something?  I will admit I have not quite figured it out yet.  I do remember the first summer I was in New Jersey – my first experience with humidity.  We did have a couple of window air conditioners so it wasn’t too bad, but I was still uncomfortable.  Then in September it cooled down and was very pleasant and comfortable.  Then the 1st of October it suddenly went humid again and I felt as if I had been run over by a train.  A clue that RA and humidity don’t get along very well in my body.

I can look back now and see it in a slightly different light and wonder – what was I focusing on and was it just one of my oh-poor-me-osis times or was there actually a trigger that put all that in motion?  It is certainly easier to look back than to be in the moment feeling everything and wondering what  I did wrong.  I suspect I will continue to wonder how what I do will feel on the 2nd day, but look at it a little differently, maybe with curiosity, interest and wonder rather than feeling a victim and someone or something is out to get me.

My rheumatologist was pleased with me on thursday, my sed rate was down 2 points and I am feeling better.  Still waiting for the surge of energy, but my joints seem to be doing better and since the sed rate is down, I will go for my infusion in 4 weeks but not see her until the following one 8 weeks later.  Any time the doc spreads out the time between appointments, I know I am doing well.

These pictures have nothing to do with topic, I just thought they were adorable.  Candy took them at Lake Radnor – such a variety of things and animals to see there.

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I think this was taken in the Spring not too long after the birth.

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They are so well camouflaged you would have to be up close to see them.

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Such an adorable face!

Thank you so much Candy, they are a pleasure to see.


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