Posts Tagged ‘rheumatoid arthritis’

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.

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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.

I Am A 30 Percenter !!!!!!!

February 24, 2014

Two years ago today – Feb 24th – I fell and broke my hip.  I had surgery to have a screw and plate put on – it was lower enough I didn’t need a hip replacement.  After about 4 days, I was sent to rehab for at least 6 – 8 weeks to heal and learn how to walk again.  I went into rehab feet first and came out on my own 2 feet with the help of a wheely walker.  After another 4 weeks of outpatient therapy, I left there with a cane.  After a  few weeks I was walking all by myself, though I took the cane to places I hadn’t been to before or if there were a lot of people around.

This is what they did for my hip, kind of explains why I spent 8 weeks in rehab.

 

Right Hip Fracture and Emergency Surgical Repair

The next time I saw my rheumatologist, she told me something interesting – 70& of people who break a bone will break another one within 2 years.  I thought to myself, I am going to be in the 30% group and now By George, I am!  Recently a friend asked why anyone, especially a doctor, would say such a thing to a patient.  Maybe it wasn’t the wisest choice of words, but I have concentrated o being in the 30% since then.  How true the whole thing is can be anyone’s guess.

I am also happy to report I haven’t fallen during those 2 years, though I did stumble against the shower door in the middle of the night.  I hit my upper arm on the glass door rail for the bathmat.  Not a very comfortable thing to do, but I didn’t fall.  The next morning I saw this huge purple bruise forming, that sucker hurt!  As I looked in the mirror not too long after, I thought “This must be what it is like to have a large tattoo” – only mine would fade and soon be gone.  Don’t think I will have a tattoo;  that’s voluntary pain and then what happens when I don’t like it any more.  More voluntary pain to remove it.

For the last two years I haven’t really thought about the 70% or the 30%, every once in a while it comes up and I choose the 30% every time.  I decided dwelling on it and being afraid of falling would be a self-fulfilling prophecy; I would rather think in terms of being the 30%.

I was also wondering if I would mark the 2nd year as the day I broke my hip; but that seemed un productive.  I didn’t “celebrate” having RA for 43 years in November, it was just a measure of time.  I see this in the same way, though no one gave me percentages with RA.  Let’s just say I have reached my goal of 2 years without a “break”.  Whether the whole things is true or not, it is now something in the past.

One interesting thing, I was sure I would set off the security scan when we left for Toronto, so I told them I would probably set it off.  So they took me to a full scan and I was done.  What surprised me was that coming through security in Toronto on our way home, nothing happened.  However, Eddie was chosen for a random scan, so he had a little more to deal with than I did.  Do you suppose they used a plastic screw and plate in my hip instead of metal?  It has me wondering.

Time to work on my next goal – not sure what it is yet, but I will be concentrating on that rather than what has happened in the past.

Go Universe!

February 16, 2014

I have had a weight problem all my life – oops, I just realized I called it a problem and it isn’t.  I once read “I am the size I am to hold my magnificence”.  That really stopped me in my tracks.  Here I have been unhappy with my size and instead, it is a blessing.  I am working on knowing it is true and knowing that I know.   Then The Universe sent this message:

You have realized, Lee, that your age, experience, skin color, personality, accent, style, saunter, weight, and height, today, are setting you up big-time for the best of your life, while adding considerably to your animal magnetism?

Nothing gets past me,
    The Universe

We’re talking world tours, Lee, fan clubs on each continent, and a TV show that follows as you create a fabulous business I am passionate about!

The two major areas I am working on are loving myself and recognizing my Life Purpose.  Sometimes I wonder if I am doing my purpose and I don’t know it.  I spent the day with my close friend Kathie who is the same age I am.  She was a court reporter for many years, then went into hypnotherapy and now is doing some real estate.  She is still wondering what her Life Purpose is as well.  I know there are a lot of people feeling that way these days; but having company doesn’t quite help me recognize mine.

I have heard the words “find my purpose” a lot, but then others say one creates it.  I have been thinking more in terms of recognizing it and creating it – I know I don’t have to know how to do it, just be willing, open and allowing.  Maybe I just too impatient for that “Aha” moment of recognition and unfolding.  I find myself wondering sometimes “Am I too old?” or “Is it too late?” – ego is working overtime to have me believe it is true.  Thanks for sharing, I choose something else.

I have always wanted to create something of my own of value but never felt I had.  Then it hit me recently, this blog is my creation.  No one else could write it they way I do, nor has anyone lived my life.  One thing through my marketing expert friend, you may have the same information as someone else, but no one presents it the way you do.  That makes you unique.

I’ve been reading a book by Richard Moss called “Inside Out Healing”.  It has been quite interesting and I find it builds on Neal Donald Walsh’s “When Everything Changes, Change Everything”.  In that, Neal spends the first half of his book talking about Past Data – all those beliefs and programs that have been built up over your lifetime.  They are not true, but they feel real.  That had quite an impact on me – I wrote about migraines a while back and continue to use it.

With Richard Moss, he talks about being in the NOW, but in a different way.  He shows a manual with the NOW in the middle of a circle, with the Future at the top, the Past at the bottom.  To one side is Me and the other side is You.

mandala_diagram

The idea is that when you are in the present moment, ego diverts you in one of four paths.   It may be the market list you need to make, the stupid things you did, a belief that isn’t true, etc.  Or it will go to another person and what they did or didn’t do, either to you or about you.  Another path is worry about the future or upset or living in the past.

the past week or more I have spent a lot of time at the computer, for work, my blog, Eddie’s Round Up and things he wanted to have typed for exhibits at the Future of Flight.  I began to think after the first or second long period at the computer – “Oh s—-!  I am going to pay for this either tomorrow or the second day!”.  But then I thought “Why do I think that will happen?  Just because it has in the past doesn’t necessarily mean it is  how it always will be”.   I began to realize I had created a belief around that, I can hear myself saying to someone more than once.  Yes, it had happened in the past, the belief that when I overdo it, I will pay for it, I have to be careful how much I do.

Then I remembered the Past Data loop I had been running for migraines, this was just another Past Data loop about what happens every time I do something and it hits me the next day or the second day.  So I told ego, “that is Past Data and no longer relevant and I am choosing something different.  In this fresh new moment, I choose filling this moment with good health and well-being in every part of my body, all Past Data is invalid and irrelevant”. How lovely to find the next morning and the mornings after that I was feeling well free of “payback” shoulder pain.

Now I am working on the cough that has lingered for 2 years, ever since I had the flu in rehab.  It takes time and some days I feel a bit discouraged, but on the whole there is progress.  now I am thinking in terms of each fresh new moment and what I want to fill it with when I bring myself back to NOW.

Milepost 43

November 30, 2013

222px-Mile_Marker_43.svg

I am not sure what I am marking, or is it just a milepost in my life?  I don’t see it as an anniversary or a celebration or anything like that; it’s simply the month I was diagnosed with RA 43 years ago.  I don’t remember the particular date, though I know it was before Thanksgiving.

We had come back from Australia in September of 1970 and found jobs as well as a place to live in about a week or so.  I was working in a nice department store in San Mateo and our apartment was in Redwood City.  As I think back to that time, it almost is as if I had read it in a book or someone told me about it.  43 years is a long time ago and a lot has happened over the years.

I am still not sure what triggered RA – was it bouncing down the concrete stairs on my butt holding an upright vacuum cleaner?  Was it lifting up the wardrobe truck to check for water damage?  Or something else I haven’t associated as a contributing factor?  Then again, it could have been my body trying to throw off the stress of Australia once I was back in my home country.  I have often wondered through the years what happened, but is that relevant now?

Then I began to see myself as a victim, an innocent bystander sideswiped by RA.  But  I now know I am not a victim even though I have spent a lot of years with a victim mentality.  It’s the “Why me?” question.  Did I do something in another lifetime and this is payback?  If so, I hope I had one hell of a good time in that other life.  Or the “What did I do to deserve this?” question.

I’ve thought about it at different times and come up with other possibilities – a preparation for the next life; this is my soul contract; there is a reason and purpose for it; this is my purpose in life; I chose to experience it in this lifetime.  I am sure there are many possibilities; what I have learned after a bit was not the “Why?”, it is the “How?” that is important.

The “How?” is the how do I deal with it?  At the time, I didn’t know I had a choice; I could go get treatment and see what I could do to help myself, or dig a hole and bury myself and not do anything.  Looks as though not knowing I had a choice was a good thing.  I think of all those times I just wanted to curl up in a ball (or as much of a ball as I physically could) and bury myself in the covers.  Then the times when I felt good I was able to do things and have a good time.

When we moved to Connecticut, I became involved with the Connecticut chapter of the Arthritis Foundation.  I started out in a support group, but found it was too “me” centered.  Yes, if I was having a difficult time, it was good to whinge and get it all out.  But I get depressed with constant whingeing, so when I was asked to be a Self Help instructor, I said yes in a shot.  Later I asked to become the Speaker’s Bureau Coordinator.  I didn’t hesitate to say yes.

I will admit both scared me a lot – I always found being up in front of people an agony.  What I learned from both of those was to be comfortable talking in front of people.  Now everything I do tends to be more personal – I can do technical but it’s not comfortable for me.  I put personal things, stories, humor as well as facts into what I do.  If time is limited, I will jettison my stories to be sure I present the important information.  I had a card with the things I needed to cover, so I made sure I followed that.  I will admit I never had a time limit, I just talked until I was finished.  Plus I always told them, any time you have a question, just let me know.

The biggest bonus was feeling I was finding something positive in RA – people would thank me for helping them, saying it made a difference to hear from someone who has it, sometimes it was helping them know and understand “it wasn’t all in their head”.   This from many older women, especially in the class.  There are all the times when I helped someone and I didn’t know it.  I often think each of helps a lot of other people without confirmation.

I loved to hear how wonderful I am, but I was also concerned.  I figured as long as I kept a balance of “feeling I was hot stuff up front” and “do I look stupid standing up here walking back and forth and waving my arms?”, then I would not get a swelled head.  Now there are people in my life who would tell me there is no danger of me getting a swelled head.  A subject for another time.

Ye Gods and Little Fishes!  I am at the end and I am so surprised.  I saw pictures in my mind as I was writing this, a bit of going down memory lane.  Interesting to think about it at this point and seeing it with a different perspective.

P.S.  You have no idea how long it took to find that photo of a mile marker 43.  I wasn’t about to let technology win this time!

I’m Amazed And Grateful!

November 13, 2013

yippeeCatWThank You www. sodahead.com for this great photo

My last post was my 200th and I now have 73 followers, that is mind-boggling.  I am very grateful to all 73 followers and also to all the people who  have read my blog posts.  All I can say is WOW!  I looked at some of the stats for my blog and was amazed at how many people in so many countries have checked out my blog.  I know some people have a whole lot more posts and followers, but it is so cool for me.

I started this blog about 3 years ago and at times wondered if anyone would be interested in what I had to say – apart from my family and friends.  I have had people make wonderful comments and I have found many wonderful blogs because of it.  How cool is that!  Thank You all for your interest and comments.

I started it  about Rheumatoid Arthritis, then I have slowly added other subjects because I was dealing with them.  Some posts – like the moles – have nothing to do with anything else, I just wanted to write about them because it was fun for me.  I have grown and changed, though RA is still with me – I have a different perspective on it and how I have been perceiving it.

I have learned so much from writing the blog and also reading other blogs, not only RA but also all kinds of other things I had no idea existed.  I am so pleased that people care enough to comment on my posts and give me ideas and possible solutions for things I have been dealing with for the past months and years.

As I am working on my own healing, I am learning more about myself; my Mom’s dementia has made it very obvious what some of the childhood programs I have been operating on all my life.  I am working on selling my Mom’s furniture so Eddie and I can have our own furniture in the living areas rather than piled up down in the basement.  But it also making me realize that is who I was and I want to be the me I am now.

I now realize I have a lot of emotion attached to my childhood and things of my parents.  I am letting it simmer on the back burner at the moment so I can truly let go.  I have come across things and each one has memories attached – yet the practical side of me thinks it is lovely but where will I put it?  I will also have to dust it.  I am noticing I am getting less emotionally attached and I’m glad about that.

So thank you everyone for your interest and support.  Consider yourselves hugged!

Local News

October 13, 2013

I have been lucky to write once a week lately, but that doesn’t stop the mind from thinking of things to write about – unfortunately I am on the freeway, in the shower, it’s 3 a.m., you name the inconvenient place.

It’s been a busy time for the moles, all sized mounds in the yard – I noticed a small one out by the garage; one of the youngsters must have been out trying those diggy feet.  It was a little mound, but he or she has the hang of it already.  That summer holiday must have energized them no end.  Bob next door suggested pumping some gas into the holes and lighting a match – wouldn’t that be something!   As it is, Delores puts down her mole pellets but can’t find an actual hole.  The battle continues.

Mon had her 95th birthday on September 24th.  Delores sent a plant, Ellen sent Mom’s favorite maple sugar candy and a dozen roses and Candy sent chocolates and a lovely teal hoodie and a sweatshirt to keep Mom warm.  I had a light purple knit top and pants with some embroidery.  It was a Tuesday but I had gone for my infusion in the morning and had an appointment at 1, so I didn’t stay long.  mom seemed rather sleepy, so I came back the next day for a bit longer.

I have had some  difficulty finding things to talk about because I understand the first 3 or 4 words she says, then it is mumbling and repeating words.  I haven’t a clue what she is saying.  She doesn’t talk about her mother or father, maybe once in a while.  She doesn’t remember as much of her childhood as she did – we went through the album I brought but she only remembered a few things.  My sister Candy solved the dilemma for me.

She has written an ebook called “The Translucent Heart” and had sent me an email with the book.  So I copied it from the library and have been reading it to Mom.  She seems alert and interested, I don’t always know how much goes in and sticks, but because Candy wrote it, she is interested.  I am on page 93 or so right now – my voice gives out sooner than she loses interest.  When we are done with that, I am going to bring Rosamund Pilcher’s book “Winter Solstice” to read.  Mom loves the book and has read it every Fall since my Dad died.  At one point she asked if I could get her a new copy, hers was falling apart.

Mom is still doing pretty well even though she needs help with everything.  she is aware of some things around her and the people, but she fights Judy all the way when it comes to any caregiving such as bathing, washing her hair or anything like that.  Maybe she feels that is the only things she has control over now.  She still goes twice a week to the Center and as long as she is able to that, it is a very good thing.  It gives her another situation and context to her life, plus her doctor is there as well.  There are times when I don’t really want to go, but she is always glad to see me and I don’t want her to think she has been abandoned.  It is not an easy situation for any of us, but at the moment things are going smoothly.

I finally finished Eddie’s new Round Up design and he will be sending out Monday.  the people in the office have seen it and love it – his boss told him he should charge money for it.  He has been bugging me for the last 3 weeks about when it would be ready to go.  I have been working on it in Group Training for Pages at the Apple store – they have helped me so much with design, learning to use the program and all kinds of other things.    It will take another couple of issues before I really have it down pat.  Eddie is pleased with it and finds it is much easier to do on his MacPro than on the PC.

To see his other ones, PNAA has it on their website.  Click the link here, click News and then Local News.  On the right is a box where his Round Up is listed as The Kaplanian Report.  His new one should be up  in the next week or so.  I am interested to hear the comments on the new design.

I’ve been debating about mentioning this, but putting it out there means actually doing it.  While I waiting for the editing from Toni on his Round Up, I started a book with posts from this blog.  I wasn’t sure I wanted to us Gift of RA because I have also written about Mom and dementia, my own personal development as well as writing.  What happened was a vision of four complete books in as a set.  I decided to call it “Finding the Gift…”; this is “Finding The Gift in Rheumatoid Arthritis”.   It may not be the same in the end as it is in the beginning, but I know I have to do something about this since it has been simmering on the back burner for several years.  I have the journals that I wrote for several years with things that have happened – a lot of information without an idea how to corral it.  Baby steps and see where it goes.  There, I said it!!!

Glitches Handled Well

March 27, 2013

I enjoyed last week a lot, I felt a feeling of well-being and energy – something I haven’t felt for a long time.  Yesterday I went to see my rheumatologist before I went to have my second infusion.  I did the first one two weeks ago so she wanted to know if I had noticed anything.  When I said a feeling of well-being, she said that is often what people first notice.  After seeing her, I went up stairs for my infusion – I asked for the corner suite, but it was occupied.  When I was there two weeks ago, I had it and it was quite enjoyable to look out to the west and the south – didn’t see much of the harbor because of all the tall buildings in front.  Looking to the south I could see the freeway and there weren’t buildings  blocking it.  Unfortunately, both times it wasn’t sunny, just cloudy and sulking.

However, all of the IV nurses at the Infusion Center were really nice, gentle when putting in the needle.  It takes about 45 minutes to do the infusion, plus they get it started by doing a saline solution at the same time.  They also offer drinks, soup, not sure what else.  The first time I was really tired, so I had the chair reclined and I dozed during the treatment.   I moved my elbow and that set off the alarm.  This time she put it in very well and it was fine if I moved.  I had forgotten my book the last time, so I remembered this time.  It made the time go by quickly, plus I was really into the book and its story.  I had apple juice, it tasted cool and really refreshing.

After the infusion, I had to go to Radiology to have hand and foot x-rays so there is a baseline to measure if there are changes as a result of Orencia.  After I finished there, I went to see my Mom.  I decided to stop and have something to eat and read for a bit.  When I got there, I found her sitting in her chair sleeping.  It really hit me, who was this old woman sitting in my Mom’s chair?  She didn’t look like my Mom – I didn’t expect that.  Then I found she is now using a walker – she has fluid buildup in her legs and it is really bothering her knees.  She won’t keep her feet above her head to help reduce the fluid so she is more comfortable.  Sucker punch two.  When I saw her last Friday, she was sleepy, so I didn’t stay very long.  She is doing well, but she mumbles a lot and I am not sure what she is saying.  She is pleased to see me and glad I come to visit, though I don’t know how much she remembers.  I  thought I had come to terms with what is happening – NEWS FLASH – looks as though I haven’t.  Now we are getting to the really hard part.

It has been that kind of week since I came home from the seminar.  I came home and found Eddie had trouble with his computer – after a while I kept thinking things don’t quite add up.  I ended up Monday morning doing a system restore – I had it written down from the last time because I wasn’t sure I would remember.  I was able to restore it and it is fine, though it cost Eddie $300 and a lot of worry – it was a stupid virus scam.  I figured a system restore should do it, though there was a part of me that was worried I would screw it up.  So the worst that could happen was I screw it up royally and then call Larry to fix it.  What a relief to have it restored and Eddie didn’t lose his Round Up and have to do it all over again.  Hooray for me!

I went to see my chiropractor after that and as always enjoyed my adjustment – plus my neck and shoulder were much more comfortable.  I was really looking forward to my afternoon nap to rest up from the weekend.  I ended up spending an hour in bumper to bumper traffic on 167 – would have been better off going on I-5.  Some days are like that.  When I got home, there was a message on my voicemail – a small financial crisis that showed me just how little I can do on some of Mom’s affairs.  Well, if nothing, it was informative.  So I had to go to her bank and later out to the Post Office to take care of it.  At times it felt as if things were falling around me, but when I was done, I felt I handled it competently – I also knew to ask for help from the Universe as well as people at the bank.  I had a feeling of accomplishment, though those three hours felt rather tense at times.

The only thing that made my heart go pity pat was that when I checked Mom’s checking account, she had too much money.  So I have to spend some to make sure she is below $2000 or she could be disqualified for Medicaid.  We had to buy some things for ourselves at Bartell’s, so I bought some things she needs – still have more to spend.  This is crazy, I have to make sure it isn’t over their limit when they check one minute after midnight on the first of the month.

I have a massage tomorrow morning and I am so looking forward to that!

What Have I Gained From RA

March 7, 2013

How strange to find myself posing a very different question from when I was first diagnosed.  In the beginning it was “Why do I have it?”, “What did I do to deserve this?” and any number of victim type questions.  Because as I have said before, I felt as if I was an innocent bystander suddenly sideswiped by RA for no reason.  For a long time it felt only negative, that there was nothing positive in it, just pain, deformity and frustration along with many bouts of crying.

The first time I felt something positive coming from RA was when I was Speaker’s Bureau Coordinator and also a Self Help Course instructor as well as training new instructors for the Connecticut Chapter of the Arthritis Foundation.  The people in the Self Help classes were great and they often told me how much they were helped by the class and the information.  It was also gratifying when they said I had helped them too.  I would tell them I was just like them, the only difference was I had been  trained to run the class.  They also helped me and were a bright spot in the week.  I remember one particular day when I wasn’t feeling well and really didn’t want to go.  By the end of the class I was feeling better and was very glad I went.

As the Speaker’s Bureau Coordinator, I learned how to speak to groups and be fairly comfortable.  Often people would ask questions, plus say how much it meant to hear from someone who had a form of arthritis.  Speaking in front of people has always been an agony for me, but after I spoke a few times, I really loved doing it.  I injected humor and my own stories to keep it from being just straight facts – though if time was short, my stories were jettisoned because they came to hear the basic facts.

I realize I  personalize whatever I write; that made it difficult to write for business.  I decided at one point that I was going to have fun with my business because all that “Life is real, Life is earnest” stuff was stressing me out.  When I started writing this blog, I found such freedom to say whatever I wanted in the way I wanted.  I still have to check out my business websites and rewrite them so they sound like me.  Maybe it is just that I have found my voice.

Just as in my Mom’s dementia, I swear there is a funny side to RA – if I don’t laugh I will go nuts.  Sometimes it sound like sick humor to those who don’t have a chronic illness, but those who deal with one 24 hour a day understand.  What I have noticed as I look back at all the stuff I have dealt with is the odd bits that pop into my head – especially in hospital as well as outpatient tests.  Thank goodness I wrote them down when I was writing a journal, because for the life of me I can’t remember any of them.  Looks as if I will have to check through them and see if I was as clever as it seemed at the time.  (Another set of posts!)

I have acquired medical knowledge, though only as it pertains to me.  I am an expert about my experience and symptoms, not anyone else.  There are similarities but I would not presume to tell anyone else what they should do.  I have more knowledge than I ever wanted to know – so it has contributed to my education.

I learned how to conserve energy – mine.  I have also learned patience, not easy and there are lessons cropping up when I least expect them.  I am a late bloomer, though I didn’t realize some of the knowledge would take this long to make sense.  I can’t say I am always patience, I get antsy about things at times and wonder why I don’t “get it”.  I keep remembering that when I am ready, it will make sense to me and the less I agonized over it, the better.

Let’s face it, I get positive feedback from people – I have had 2 or 3 women tell me I am their hero and inspiration – rather heady stuff.  Often people say they admire me, they don’t know I do all that I have done.  Another comment is how positive I am while dealing with RA.  My first thought is they haven’t seen me in my oh-poor-me-osis days or my hurt-like-hell days and I am a whimpering mess.  What I feel is that I am of help and use to them in different ways – that feels so good.  I have also learned that I may never know when I have been of help as I am going about my life – I don’t have to have each one of those people tell me.  A little feedback once in a while is great.

Looks as if this is going to be Part 1 because there are a lot more things to write about that I have gained.  It just hit me that I am doing this blog because of RA.  It has been a great release for me and I so appreciate the people who comment, like and follow my blog and let me know they enjoyed what I wrote.  I didn’t expect to write it;  I had this urge pushing and pushing me until I started the blog and I have enjoyed it for the past 2 1/2 years.

Tell me what you think, I would really like to know.


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