Posts Tagged ‘Health’

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.

Woo Woo, Goofballs and Hocus Pocus Water

February 24, 2013


Although it doesn’t show everything, it does give you a good idea of some of the modalities can be used.  To see it larger, go to Katie’s blog.

In the past few years I have been looking into Alternative Medicine since I am not all that happy with traditional medicine.  I am tired of pills, blood tests, and all of that – certainly isn’t doing good things to my body.  I am working on what the root cause of my experience is and what in my thought patterns, emotions, energy, etc. – what people might call woo-woo, airy fairy or touchy feel stuff.  Since it is out of the mainstream, most people think it is a lot of baloney.  However, I am finding more and more that it is helping me and it is a community I feel more at home.

I have often felt out-of-place and uncomfortable in the business world where cold calls,  networking and all that “Life is real, Life is earnest” competitive stuff.  I decided to have fun with my promotional marketing business and see how that works.  Though I have found in the last two years I haven’t been working with my business because of Mom and taking care of her affairs, a broken hip and lately with finding an adult family home, then applying for Medicaid and then 5 weeks of flu.

So in between taking care of all those things, I have had some regular clients still ordering and I have done a lot of work on myself.  I have a couple of immediate goals, one is to get my energy back and continue working on my healing and spiritual awareness.  I also am at a crossroads in my life – do I want to continue promotional marketing or go with a specific direction?  I also have some things I want to do that are my own, this is now the time for me to do it.

Part of woo woo is  angel cards, oracle cards or tarot cards.  I have been receiving Monday morning Soul Card Readings – all of them are spot on about going in my own direction.  To have courage, stand up for myself, empowerment, generosity, even one about writing.  I am listening more to my intuition – I actually have it after all – and beginning to trust it.  This is one of the cards that came from Doreen Virtue’s Ascended Masters deck, the other is from Denise Linn’s Gateway Oracle Guidebook:


Yesterday when I was having my massage, Debye was working on the back of my left hip and suddenly the words “stuck energy” came up.  Later I told her about it and she said she felt the release of energy when she was working there.  To some that just  touchy feel stuff and weird or oddball – it really isn’t anything.  It felt right to me.

I am married to a Point A to Point B guy – the straightest path between 2 points.  I am a Scenic Route.  This applies to traveling in the car as well as how we talk or do things.  I don’t say much to him about what I am learning and experiencing because he thinks it’s goofball stuff.  We are each entitled to our own opinions, his interests are aviation, car and heavy-duty trucks and their parts, what’s going on in the world and at home – he doesn’t understand my stuff.  We always used to say “You don’t have to be crazy to live in our family, but it helps”.

0009776_zwiesel-1872-enoteca-stemmed-water-glass_320One thing I learned from Debye was asking Dr Lang – an ascended master – to put his “something something” in a glass of water by my bed at night.  In the morning, I would drink it.  He saw me doing this for quite a while and finally asked what was I doing?  Was it hocus pocus water?  Rather than explain, I told him “Yes, it is.”  I think there are times when he doesn’t quite know what to make of me, what I think and what I do.  I found a really cool stemmed glass at Good Will for my hocus pocus water.

I would have had this post done on  Friday but I have been looking through the Soul Card Monday readings looking for certain cards that came up.  Then I spent a lot of time trying to get them on the same line, but I keep forgetting that what I see as I write is wider than the actual blog.  Hence photos have a tendency to not fit it.  I am still getting the hang of how to put things in and to make it look good.  I also spent a long time looking for something to illustrate woo woo or goofball – mostly what I found for woo woo was a drink that had booze in it, not quite what I had in mind.  Well, that’s the thing about writing a blog, sometimes everything really clicks and other times it gets a bit cattywampus.  This week is cattywampus.  Enjoy!

What Is Stubborn?

February 21, 2013

This is the post I have been working on since Feb 10th – In many ways it still feels as if it is still a work in progress.  Isn’t that Life after all?

I ask the  question because I have been reading Louise Hay’s book “You Can Heal Your Life” and many of the things I am looking at have stubborn as the cause.  I don’t think of myself as stubborn – I check the dictionary and it says:  Having or showing dogged determination not to change one’s attitude or position on something, esp. in spite of good arguments or reasons…  Now is that really me?  Let’s face it, I feel as if I have spent my whole life doing what others wanted, not always willingly or with good grace.


Am I really stubborn?

However, the more I have thought about it, the more I wonder if it has to do with seeing myself as a victim – of RA, other people, circumstances, etc.  I have finally realized and understood that I have always felt I was an innocent victim sideswiped by RA for no reason – not quite accepted it or willing to admit it out loud much.  I have felt helpless and powerless a lot of my life because I now realize I gave my power away.  Who knew I had power?  What a revelation!  However, that victimhood belief has been in there for over 6 decades, going to take a while to dislodge and clear it out.  If not now, when?

In looking at just one entry for knee problems, she writes it is “Stubborn ego and pride. Inability to bend. Fear. Inflexibility. Won’t give in.”  I have been thinking I am not quite willing yet to actually give up being a victim – much too comfortable and familiar at this point.  Then I have to ask myself “What would happen if I did let it go?”.  That would be a radical attitude overhaul.  Then what would I replace it with as a positive attitude?  I have been in this same mentality for a long time, I am now on autopilot.  It takes a conscious effort to say “Thanks for sharing ego, I choose something different”.

I am getting better at noticing when ego pops in with her 2 cents worth, I hadn’t recognized before or even understood what was happening.  I have held on to all the hurts, anger and resentment of things people “did to me” – hugging them to myself as proof of what a victim I am and how mean people have been to me.  As Dr. Phil asks:  “How’s that working for you?”.  Not very well.  I don’t like feeling like a victim any more, it is too much of a powerless feeling now.  The curse of being a good girl, following the rules and doing what I’m told.  It is hard to break out of that at the moment, it is getting better and I am more often   I have to look this one up as well able to do and say what I want.

So holding on to victimhood, all the hurts, anger and resentments – is that where I am stubborn?  Or not loving myself in spite of all the evidence to the contrary?  Looking at things from the negative view rather than the positive?  At this point I am not sure if there is one definitive answer or a series of  different answers.  I am certainly open to any ideas or opinions to help clarify it.  I have probably gotten too close to it and overanalyzing again.  Maybe if I go take my shower and get dressed, it will seem clearer to me.


It is now 10 days later and it isn’t very clear yet.  I also got a message about being inflexible – another word from Louise Hay – I don’t quite see how I am inflexible.  It feels as if most of my life I have had to put my life on hold, cancel things or postpone because I had to do something for someone else.  Wouldn’t being inflexible mean I do my thing before I do anything for anyone else?  I have to go look this one up as well:

Not willing to change ideas, beliefs or decisions – Something or someone who is inflexible cannot or will not change or be altered, even if the situation changes.  Does not bend.


Inflexible? Don’t be ridiculous!

Hmm, I keep thinking that doesn’t sound like me – I feel as if I am easily persuaded and let people talk me into something.  When I know that I know something but I allow someone to talk me into something, I kick myself for not listening to my higher self.  There are many times when I don’t trust my higher self, that I still look to others for validation instead of from inside myself.

I suspect that both terms have more to do with my beliefs about myself than anything else.  I was hoping that as I thought about this and wrote about it, I would have a better idea what is happening so I can clear any negative energy and understand better.  I suspect I will have to put it back on the back burner again and check back in a while.  I would be open to any ideas or explanations.  I suspect I am still too close to it to be objective.

Is It Pain?

January 27, 2013

Interesting day Friday.  I went up with my other half at o dark 30 because my friend Char was having a birthday lunch in Edmonds and it seemed silly to take two cars up the same direction.   I stayed at the Future of Flight until about 9:30 – I found my little terrace upstairs by the entrance to the Stratodeck – almost said hollow deck.  It is warm and plenty of light plus fairly quiet.  I read my book because my hands, wrist and shoulders have been very uncomfortable because I have spent a lot of time on the computer working on my blogs.  I have and now I made a new one called – one is about finding the gift in Rheumatoid Arthritis and the other is about cats.  I planned to write about my two cats Muffet and Tiger, about my Mom’s cat Josephine and also about a friend’s cat Subaru.



It was probably a good day to up north so I wouldn’t be writing on my blog or using the computer very much.  I went to three stores and walked quite a bit – oh were my knees, ankles and feet sore and uncomfortable.  I was glad to sit in the car for a while.  I was really stiff when I got to the restaurant, but I had a different thought about it.  I had been listening to Dr. Pat and she had some people on who are doing a 5 day workshop – running the bars and then other things for the other 4 days.  I would love to go, unfortunately it is a bit spendy .

One of the people talking was Ricky Williams, a well-known football player who talked about when he was playing.  He would be in pain in practice as well as playing, so he was taking pain killers a lot of the time.  What he finally realized was that he labeled it pain, locking in the idea that it is pain.  It was the idea that “I have pain, what can I do to get rid of it” thinking.    Then he changed is thinking to “What is my body telling me it needs?”.  Pain is your unwillingness to listen to your body.  Words are powerful and thinking in terms of intensity of change which you asked it to do, your body is stretching, changing and elongating to  create what you asked it to do.

So I thought about that as I was driving to Edmonds to meet Char and Joyce.  I had to concentrate because I have spent the last 42 years thinking “Pain, how do I get rid of it” and certainly feeling a victim and many cases of oh-poor-me-osis.  Now I realize I have implanted in my mind.  Takes some getting used to, so now I realize I have not been listening to my body at all.  I will admit I was very uncomfortable all day and evening, sometimes a new way of thinking takes some time.

I had gone up with Eddie and I was glad he was driving, I think I slept most of the way home.

I had a lovely time with Char and Joyce – though I still let Char know she is a year older than I am.  Actually, for 13 days we are same age.  That’s only because I went to school a year earlier that every one else when we moved to Seattle.  Mom and Dad say that I made so much fuss when I saw Ellen go on the bus to school to see where she went, they finally allowed me to go to.  Everyone in my graduating class was a year older.  But I would have missed out in knowing Char in 9th grade.  Who knows how my life would have gone if I had been in school with people my own age.

Yesterday I was amazed at how well I felt – not much discomfort, though walking through a couple of stores did make my legs hurt a bit.  I will admit to taking an extra prednisone when we had dinner, plus some Advil before bed.  I had wondered how I would be today because usually the second day is the worst.  A little stiff but otherwise doing rather well.

Since I didn’t visit Mom on Friday afternoon, I went yesterday while Eddie was doing the laundry.  She was doing pretty well, she said Elizabeth called earlier.  When I was talking to Judy, she said she calls everyone Elizabeth.  Interesting because that is my legal name.  Yet on Tuesday she wanted to introduce me to Judy and said I was her cousin Betty.  I have finally realized correcting her just agitates her and it really doesn’t matter.  So for a bit I was Betty.

Lee Proposes, God Disposes

January 3, 2013

I had planned to write a blog post 2 1/2 weeks ago called “The Bears Have It Right”.  I had decided to take the last two weeks in December off just relaxing – hibernating, so to speak –  doing what I wanted, writing blog posts as well as in my journal.  I needed some quiet time to rest and recuperate from this last quarter of the year.  Unfortunately I came down with the flu and have been coughing, blowing my nose, losing my voice and dealing with a sore throat.  If I had been in any mood to write, it would have been to whinge about how badly I felt and chronicle in detail the day my throat felt as if there were thorns in it – made swallowing, sneezing and coughing very uncomfortable.  Then I would have complained the day I had a horrendous headache – all of which would have been against my rule of No Whingeing.  So that is why you have not seen a blog for  2 1/2 weeks.  To make the whole thing more interesting, Eddie came down with it as well about a week after I did.  What a pair we have been.  There are times when I think God has a very peculiar sense of humor – last time I needed a break, it was a broken hip rather than two weeks at a spa as I had imagined it.

So here I am in January 3rd, feeling a whole lot better, though still with the stuffy runny nose and cough.  I am beginning to feel more human again – boy does that feel good.  I am still lying low this week to see if I can get over it all as much as possible before starting the new year.  I am happy to say I have been sleeping well for a while, though I still don’t feel rested.  But I think I am working through the fatigue of this year and last by going down layer by layer.  It has been a very different Christmas this year, the first time we have been on our own.  We always came to Seattle for Christmas with Mom and Dad and my two sisters – didn’t seem like Christmas otherwise.  The only decoration we put up were the cards that arrived – thank goodness Eddie was on the ball sending ours.  Christmas Day we went over to see Mom and bring her a box of goodies.  We also brought Candy’s gifts with us since she sent them to the house.  She was pleased to see us, even though we were both feeling terrible.  They had all been given gifts – John gave Mom a large teddy bear – she really likes it and cuddles it a lot.

I wanted to give the others in the house a gift, so I bought handkerchiefs for John and Wendell, a plush bear for Jennifer because she keeps admiring Mom’s and has said she wished she had one.  I gave Monique and Jan each a bone china mug and scarves to Didi, Judy and Susan.  I appreciate their caring for Mom and  being there for her.  Mom is often confused and has been having trouble sleeping at night.  To counteract that, she sleeps a lot in the day.  They have a new med to help her sleep at night but it hasn’t kicked in yet – it may take a couple of weeks.  One day I went to see her and she was sound asleep – she had not slept well the night before.  Another day she had just gotten up – it was about 1:30 in the afternoon.  She seems to be more forgetful when she is timed and they are beginning to see her feisty, irritable side now.  When I saw her yesterday, she was very upset and wanted to go home, I think more likely her mother’s house, though she did say she wanted to live with me again.  Part of it is not sleeping well and part is the dementia, it was upsetting to be there.  This is definitely the hardest part of the disease.  I talked to Judy about it and she helped me to understand about it a little more.  I have to remind myself her perception is not always a true one.

2012 has been a challenging year for a lot of people, not just me.  What I would rather do when I look back over the year is to see the gifts in it.  Although it has been difficult taking care of Mom and then finding a place for her to live, plus all the balderdash applying for Medicaid, I am realizing I can ask for help as well as step up to plate and deal with what comes.  I have realized that a lot of my childhood programs have been hitting me in the face so I finally have begun to recognize them.  One was “Don’t ask for help, don’t bother or burden others”,  I am listening to my older sister’s advice of “Ditch it, girl”.  With the broken hip, I had a break from Mom and home, though not quite as I pictured it.  But it gave me a chance to have time on my own where the focus was on me and what I needed.  It also gave Eddie a chance to see what I had been dealing with all those months.  Yes, I still had to deal with stuff for Mom on the phone, but I could forget about it for a while as I was doing therapy and sleeping – not a lot of energy or interest for anything else.

I suspect I will be able to see the gifts better as time goes on, it isn’t always apparent at the time.  I see 2013 as a new beginning, though I am not sure what it will be or how it will show up – I look for what is for my highest good, what works no matter what form it appears.

RA Consequences of the Move

October 21, 2012

When I wrote the post yesterday, it was mainly about the move, Mom and  the aftermath.  I can’t believe I forgot to mention that I was miserable because my right side was so painful in the neck and shoulder.  It was as bad as last year after I spent so much time on the computer doing quotes for a client.  I didn’t do much in the way of lifting or doing things, though I suppose not wearing my collar while I worked on the inventory lists on the computer might have done it.  At times it was like an icepick in my shoulder, I couldn’t move any way that wasn’t uncomfortable – even the hot tub at the spa didn’t really do it.  My knees were also very unhappy – they have been uncomfortable for awhile – could it be The Preparation from my Tai Chi lesson?  I was really hurting when I was taking stuff to the garage to put in the car.

So not only have I been exhausted, I have been in pain as well – let’s face it, that doesn’t help with energy.  Stress causes difficulty and flare ups; that means the body is using all her energy to fight the RA and flare up.  Not much energy left for anything else.  I have done the things I have to, some things for myself – like Olympus Spa – and on Monday I went to see Dr. Cheryl, my chiropractor.  She was able to take most of the icepick out of my shoulder, so I was more comfortable.  I saw Debye for my massage and learned I have some emotions stuck in my abdomen.  People have told me there is a lot of emotion connected with this move and the whole situation – so far I haven’t really identified it.  At the moment I am not ready to go there – though I was in the bathroom a few days ago and had a knowing there is more emotion below the surface than just the feelings of frustration, resentment, anger, etc, from the past few months and years.

I went to see Mom on Tuesday, she was sleepy and not quite with it, so I wonder if this has tired her out a lot as well.  I saw her again on Friday and she was more alert and with it.  However, both times she asked why she is there and if she has to stay.  I told her it was her home now and she is safe as well as taken care of by the caregivers and Didi.  I have no answer for her other than that – I know I can put myself on a guilt trip and although I am not boarding that bus, I felt a foot or two on the step.  I know it has only been a week and a half, it does upset me to have her ask.  She keeps asking about her parents, if I have seen them.  Then she asks if they are dead – it seems as if it is the first time she heard it.  I tell her they are watching over her and preparing a place for her, they are waiting for her.  Then she wants to know how she can get there – all I can tell her is I don’t know, no one has come back to tell us how it all works.  I don’t know if that helps or not.  I am wondering if my visits are making harder or not.  Apparently she was asking about me and she was glad to see me.  She says it is a nightmare there, but they are good to her – how accurate are her perceptions?  I need to ask Didi what works for her about visits.

I know this is stress for me, not good for the body, mind or spirit.  Several people have told me I have done a wonderful job taking care of Mom as long as I have.  Here is that negative take coming up – I didn’t do it to the absolute nth degree, I have be irritable and have yelled at her – not patient enough.  I have to stop and tell myself taking care of her has come to affect my health and my marriage, I have to protect myself or I will be back in rehab (if I am lucky!)  For so much of my life I have felt responsible for the world, of making other people happy at the expense of myself.  Now I am learning to switch gears to take care of myself first so I will have overflow for others.  Are they childhood messages or the ways a middle child operates?  Probably some of both – my older sister Ellen would tell me “Ditch it, girl!” in no uncertain terms.

As a result of the shoulder and neck pain, I haven’t been able to really use the computer or pen to write about all of it – it really bugs me because it is one of the ways I can release and clear out a lot of stuff I don’t want to hold on to any more.  I also have projects I want to work on and there is my business that has languished for two years so that there isn’t much of it left.  I wonder how it will feel to be finally rested and have energy – it is been so long.  Certainly it is easier to do things with a lot of energy – I just cleaned the new bathroom, had to rest, now it is time to do the floor.  Imagine doing it all at once and not having trouble bending and reaching, plus have the strength and elbow grease for those places that really need it.  I am looking forward to that!

Hugs and High Fives

September 15, 2012

With all the stuff happening with my Mom, I hadn’t really paid much attention to how I am walking and what’s going on with my hip.  I am pleased to say that I don’t use my cane much, though I do have it in the car in case I go somewhere unfamiliar or with a lot of people around.  Most of the time I don’t use it – Wow! that is so cool!  All the hard work over the past few months has really paid off.  This week as I was coming back from the adult family home to pick up papers to sign, I decided to go visit my friends at Stafford Health Care.  I have planned to do it, but my goal was to be at a point that I could walk in there without my cane and be about the way I was walking when I fell.

When I walked in, it felt very familiar, as if I had come home.  I went over to the therapy room first and surprised the therapists.  Most of the ones I worked with are still there, Tony left to be a substitute at different centers Consonus contracts to; Sebrina has moved to Florida.  But Carol was there – we spent many hours together and she  devised new games to help me stretch parts of me that weren’t working as well.  I forgot to ask her if she is doing “Tape My Butt” with any one – she had a great time doing it with me.  And it worked.  Marilyn is still there and I had a hug from her; Michael is still there and showed me pictures of his daughter, now 6 months old.  Marion who was my occupational therapist was there and was pleased to see how well I am doing, plus a couple of therapists I hadn’t worked with but know me.  Arthur is now full time – he was a substitute and was away for a bit.  When he came back, the other therapists wanted to surprise him because they kid him about his mustache.  So someone found some stick-on  mustaches and had them all on when he came back to the therapy room.  I was the only patient there and they gave me one as well – was he surprised to see us all with hair on our upper lips.  He laughed and was up for a group picture as well.  They did a lot of kidding around but they also did a great job of helping all of us improve so we could go home.  It felt good to hear them say I am one of their success stories.

I went down tot he first floor to see Eleanor, she was my aide most of the time and a wonderful woman.  She had to do everything for me in the beginning and took wonderful care of me.  As I got better she began to tell me “You can do ti, I’m not doing it for you any more”.  yet when I had that terrible flare up and she found me bawling my eyes out sitting on the toilet, she was a warm loving Mama Bear comforting me and helping me to do things.  She doesn’t suffer fools gladly, but when you need help, she is there for you.

I was so glad she was working that day, so I went down the hall until I heard her voice.  I found the room she was in and stood in the doorway until she saw me.  Then I stepped away a bit so she could finish with her patient in that room.  I got a big hug from her and she was delighted to see me walking without a cane.  She did her job well and I am so very grateful to her.  She too said I am one of her success stories and it was lovely to have such a warm welcome.  I also stopped by the nurses station and said Hello, most of them I recognized and they recognized me.  I felt so at home there – though I have no desire to go live there again.  I have said I would miss seeing all my friends when I left to go home and it still feels that way.

I didn’t see Katrina because she was doing showers on the third floor and I don’t think LeAnn the nurse was working that day, nor did I see Theta – I was sorry not to see them and give me hugs as well.  But I plan to go back again ever once in awhile.  They said very few people come back to visit – I wonder why.  In spite of the pain and difficulties during those 8 weeks, it was a very positive experience for me, all those wonderful people made the difference.  I am so glad I went to visit, I was delighted to see them and it was wonderful to have such a warm welcome.

Someone’s Life In My Hands

September 2, 2012

It is scary to realize I have to decide the direction my Mom’s life will take.  It is a big responsibility and I want to do what is best for her and for us.  My biggest fear is making the wrong decision about what adult family home will be her new home – I know it has to be done and I am looking for the place that is the right fit for her.

The program I enrolled her in at Providence has done a great job of providing so much – a day center to interact with other people, all her medical care, supplies, help in finding a place for her, pharmacy – it is a great program.  I have gone to see three adult family homes, the first was okay but had a lot of drawbacks even though the owner is known for her patience and good care of dementia patients.  The second is a good potential place, still some questions to answer.  The third was okay but a bit far out from us and not quite as nice as the second.  However, the woman who owns it is good with dementia patients where the second is a somewhat unknown quantity.  But I need to look at others and let’s face, labor Day weekend is a bit difficult to find people home.  I have looked through the list and made notes, so I now have to at least drive by and see how they look.  Some have a picture of the front, but not necessarily very clear or angled for a proper look.  I also used the satellite photos as well, I could see fairly close and tell if they have a back yard, how big the house is, etc.

This all makes me very uncomfortable, I know being uncomfortable means out of my comfort zone, stretching and learning; I’ll be honest, I would rather have someone else do it.  But it is my responsibility and I need to make sure it works for Mom.  I feel as if I am between a rock and hard place – it’s getting very difficult to have her living here but it is difficult to work on the process of finding her a place to live.  I get that tickle of fear in my stomach and want to be anywhere but here.  Yet I know God has already created a solution that works and I am working on letting go and allowing the solution to emerge.  It isn’t easy because I keep obsessing about the whole thing because I don’t want to “get it wrong”.  I feel sharp pains on my left side from my spastic colitis  as I think about what to do and where is best.

My life would be a lot easier and less stressful with Mom in an adult family home.  I can’t give her the care she needs and to be honest, I don’t have any patience left.  I have to cancel my life to accommodate her or to do the things that are necessary – doesn’t leave much time for my life.  My business is down the tube because of it – though the broken hip didn’t help either.  She goes to the Center 4 days a week, but that doesn’t leave me a whole lot of time to do much.  And if she isn’t ready for the van, as happened last week, I had to take her over – there went my day alone because I also needed to talk to the social worker.  By the time I got home, I only had time for a nap.

I am at the end of my energy, I am tired physically all the time and as for mentally and emotionally, I am so weary and getting close to the end of my rope.  It is very energy and time consuming even with care givers here, I couldn’t do it without then. I tell them every time how much I appreciate what they do and thank them for being here – I also had quite an education when I was in rehab.  I told all the caregivers thank you and how much I appreciate every thing they do.  After a bit I would ask if they were tired of hearing me say it; most often they said they weren’t tired of hearing it, it made up for those who never said anything.

I have started reading a book called “Contented Dementia”, recommended to me by my caregiver counselor.  Yes, I have one and we met last Wednesday.  I have seen her several times, her job is to be there for me and help me understand what is happening as well as solutions to situations I don’t know how to handle.  She thought this book would help me especially in understanding more about what is going on as well as how to answer some of those questions Mom asks and I don’t know how to respond.  Lately, Mom has asked about my Dad and was really upset and unhappy when I told he was gone – it was as if she had not heard the news before.  Wow! does that make me feel terrible!  She now asks where her parents are, so I am learning to say they are here.  If she asks where they are, I tell her they a far away.  She has asked me where my mother is – the first time I told her she is my mother.  You would have thought I had hit with a cattle prod because she looked so shocked.  Now I have learned to say my mother is at home.  If Mom asks where, I just say she lives close by.

Every day is different and I wonder what the day will bring – something funny, a question I don’t know how to answer, her stubbornness and refusal to take a shower or change her clothes or not wanting to go to the Center.  All I want is some peace and quiet.

Squirrel Wheel Week

August 6, 2012

I feel I have been running the squirrel wheel for the past 2 weeks – the only difference is that I actually accomplished things.

I have enrolled my Mom in the PACE ElderPlace program, she has new doctors, caregivers, etc. now.  Not that she is all that happy about it.  But this is an all-inclusive program with a Day Center 5 days a week and caregivers for the days she isn’t there.    It began August 1st, but on the 30th of July  they sent a van for us so Mom could meet her new doctor – a really neat older woman – a nutritionist, the physical therapist and the nurse.    I arranged for someone to come in the morning and help her shower and dress so she would be ready at 9:30.  Then Tuesday I had the same caregiver spend the day with her.  Wednesday the program began and Nancy came Wednesday morning so I could go the Breakfast Club.  I had hoped to go out a bit but John the plumber was coming after Breakfast Club, so I never was able to leave.  Nancy left at 2:30, so that was my day.  Thursday they didn’t have a caregiver – guess who had to cancel plans for an outing with my good friend Charlotte.  I was really hoping it would work out and upset when it didn’t.  Then Friday Mom went to the Center but I had to meet her up there at 11 for her physical – she was not a happy camper.  By the time that was finished I only had time to have lunch before I needed to be back when the van came to drop her off.  Another day shot.

I think the schedule has almost all the time covered , there wasn’t a caregiver available for this morning, so it was up to me.  Mom was not happy about going to the Center, kept asking me why she had to go there.   She was at me and at me until I lost it and told her frankly I needed time to myself.  Then she said I am trying to get rid of her.  No telling what she will say about it when she gets back in a short while.  Or how tomorrow morning will go.  The schedule is Monday through Thursday at the Center, 9-4 Friday Saturday and Sunday.  It was done this way so Eddie and I can have a weekend to ourselves.  I was hoping it would be Tuesday through Friday so Mom’s Domino ladies could meet her on Monday.  Unfortunately the Center on Friday is filled.   So we’ll see how this works.  It pretty much means I only have about 4 hours to myself Monday through Thursday and most of the day Friday – I will see how I can arrange my life around it.

I have talked to several people at ElderPlace – the doctor, nurse, social worker, home management coordinator, recreation therapist, physical therapist – I think there are still several to go.  I have the impression the first month is like a shakedown cruise to see how all of it works.  They will be getting to know Mom and I hope she will begin to like going there.  So much behind the scenes stuff to do, for me and for them.  They are a great group over there and are used to working with people who don’t want to be there.  I will admit I can’t do it any more – I feel the way I did just before I broke my hip, worn out physically and exhausted mentally and emotionally.  We are looking to find an adult family home for her because she is at a point where she needs more people around her.  She also needs a lot more help and care than before, her domino ladies have noticed how  fast she has gone downhill in a short time.  A small part of me feels a bit guilty for doing it but most of me just feels it would be such a relief.  Besides, maybe when she is settled in a new place we can have a better relationship even though she often doesn’t know who I am.  I have had several people tell me they have a better relationship with their mother now that they aren’t living in the same house.

One thing I kept hearing in rehab – “You can’t go back to doing all that you were for your mom or you will end up back here permanently.”  I am concerned about my health and just how much I can do.  I do know I am very careful around doorways when my Mom is around.  It is also affecting my marriage and that is very important to me, so at this point it is definitely time to find “a place for Mom”.

The interesting part is in the last few days I have been feeling more confident of myself – it isn’t easy navigating through unknown territory with land mines, but I have great people helping me and I now realize I can do it even when it is uncomfortable.  One of the gifts of this whole situation.  I have often wondered if I might have felt more like an adult if I had had children.  Well, guess what, I have a 3 year girl with an adult mind and it has really made me grow up even more.

Another Ball To Juggle

July 22, 2012

Sometimes I wonder if I am in my right mind.  With all the stuff happening I have enrolled in a drug study for RA.  It is focused on blood pressure and how it is affected  by the drug.  Fortunately it is only a 35 day double blind study, then I will be on open label with the real drug.  I don’t have to go of any of my meds and we’ll see how it works.

I found out about it at the beginning of the year – it was for the full study and there was such a time crunch that it wasn’t really going to work for me to be examined and the labs before the deadline.  However, Cari told me they were doing this second part with blood pressure focus and it would be a short one – that I qualified for it because I am on a blood pressure med.  She thought it would start in March but it was only last month when she contacted me again.  Last Monday I went down to Tacoma to do lab tests, blood work, TB test, chest x-rays, examine my joints plus questions, questions, questions.

The problem of being 65 and having RA for 41 years is that I have done a lot of things over the years and it is hard to remember just when things occurred.  So when she asked when I started Methotrexate, I had to stop and think – Where was I at the time?  Then I could figure out approximate years and then what was happening at the time.  First Cari asked me a whole bunch of questions, then Dr. Ettlinger has a whole mess himself.  They wanted concise answers and I have a tendency to give all the details – probably took longer than it should have.

They said they would process the tests and see if I qualify – three days later Cari called to say I passed with flying colors.  Except that isn’t necessarily good news.  It means I have more than 4 painful joints, my sed rate is up and I can’t remember what else was elevated.  So it may not sound good in normal circumstances but in this context, it is great news.

I went back a week later  and they gave me a blood pressure monitor and a modem to take home with me – they wanted me to take my blood pressure twice a day – two times one minute apart.  Fortunately the monitor keeps the readings because the modem was not working.   Cari had been on the phone with the group with the modem but no matter what she tried, it really wasn’t behaving.  She had me take it home to see how it worked here – it didn’t.   So I called her that afternoon and told her it definitely wasn’t working, so she was going to call and see about getting another one.  She thought it would arrive on Wednesday morning, so she was going to call and let me know when it arrived.  She did call but it wasn’t going to work very well for me, but since I was going to be in Edgewood the next day for my massage, I could meet her outside the Safeway in Milton.  And so it worked out well.

I have been using the monitor since I saw her last Monday and it is going well – the modem is working and all is hunky dory.  It is rather interesting to see what the blood pressure is, plus my pulse and so far it hasn’t gone above 117.  It also went down to 96 – reminds me of rehab when they were constantly doing my vitals every time I turned around.  My pressure ranged from 97 to 132 – the last one was when I was scared out of my sleep in the middle of the night.  I had no idea everything could vary so much.

Next step is Tuesday – I will go back and give them the modem and monitor, then they will put a 24 hour blood pressure monitor on me.  I will come back Wednesday morning to give that back to them and then actually start taking the drug.  I am going to have to fast for Wednesday morning – wouldn’t you know it would be Breakfast Club.  I need to remember to take something to eat when they say it is okay, I will be hungry by then.  who knows what else they will want to do before they let me go home with the drug.  It’s an interesting process and I wonder what the results will be.  It is probably easier to just forget about it and do what I need to do, then maybe one day I will notice how much better I feel.

It should be an interesting week, beginning the drug study and my Mom will be evaluated to see if she qualifies for a program to help her with activities and another place to live.  I am concerned about the transition and how it will be for her, so I have asked God, my angels, spirit guides and master teaches to create the solution – to know it is already in place.  I am so glad I am not all alone doing this.


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