Archive for May, 2012

Writing A Blog

May 27, 2012

The cool part of writing a blog is the freedom to write about what I want, how I feel, how I see things, etc. without having to fit any mold.  This is all about me, my life and what I am learning – a way to help others and for me to learn from them as well.  It isn’t like school or business where it has to be a certain way, meet any particular standard or fit any mold – I thoroughly enjoy the freedom from all those restrictions.  I can write about RA and my experience with it, what I have learned, what I still have to learn, all with the hope it will help me clarify things for myself and help others along the way.   After a recent post, I suddenly began to doubt myself, wondering if it was something anyone wanted to read.  I wondered if what I was writing was “right or good enough”, would it turn away the people who have been reading my posts.   I had to stop and catch myself and realize those doubts came from ego.  Then I told ego “Thanks for your concern and wanting to protect me, I choose something different”.  If I sit and scrutinize everything I write,  worrying what people might think about it, I might as well pack it in and be done with it.  I finally understand I am speaking my truth at last.

Most blog entries have a specific subject and I start in and it writes itself to the end.  Other time it is like this one, I get an idea and write a paragraph or two and then wonder where does it goes, what do I write about now.  Some things I write about may seem rather airy fairy, touchy feely, woo woo, goofball stuff – everyone is entitled to their own opinion. I find it helps make sense of what I am feeling, thinking and experiencing.  I have never really felt I fit in the regular world, not sure where I fit in, if I did.  With the personal development I have been doing, networking for business with people in alternative medicine and finding myself much more open and non-judgmental, I have found a place where I am comfortable, where I belong.  I may not know specifically what I want to do or how my life will look, but I know how I want it to feel.

I look at my life now and how it was a year ago – such  vast difference!  At this point, the focus is on my Mom and doing what’s best for her, there isn’t a whole lot of “Me time”.  Here and there I have been able to do things for me, the deep tissue massage has truly been a revelation to me.  I have always wondered about past lives and if it was true, plus what were mine like.  Several times in massage Debye has had glimpses of me as a Roman warrior.  That I was strong, powerful, confident and also imposed my will on others.  This lifetime (maybe several others) is the time to balance that karmic energy and experience.  It is not good or bad, simply an experience I chose.  I see my life this time and it seems I have had people impose their will on me; wonder how it felt to be that strong confident that Roman Warrior.  It is such a new concept for me, I am just sitting with it and letting it simmer on the back burner.

I have been putting tags on my posts – I just learned how to do it.  As I read over them, I am amazed I wrote them – I have been writing down what is happening in my life and how I have been thinking about things.  It makes me feel good to know I  am writing so well (sorry ego, I have confidence in myself rather than thinking it is bragging or boasting).   I have learned from writing down what’s happening, I hope in some way it can help others.

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Truly Back Home Now!!!

May 27, 2012

All three of us came back to the house last Saturday because the bathroom was mostly finished.  The shower doors weren’t due to be installed until Monday, so it was a spit bath or nothing.  The whole bathroom looks amazing – when I asked Brad the contractor how he felt about it, I expected him to be pleased.  What a surprise when he said he was thrilled with the way it  looked.  Now that was unexpected and gratifying.  Now that the doors are on the grab bar inside the shower has been installed, what a pleasure to have a shower without climbing over the tub.  It was well worth the three weeks it took to transform it.  The stall is only about 4″ to step over, I was preparing for 5″ with my OT in rehab.

I will say it has been an adjustment to be back here, sometimes it didn’t feel real in the beginning, but I am doing a lot better now. I think it has been the hardest on Mom, she is still adjusting to it and believing it is real She is getting more and more confused and no doubt those three weeks in the adult family home really confused her.  So we are taking it slowly for her, not doing any other changes like new towels, etc. until she has adjusted.  It has made us realize it is time to find a care facility for her – what kind I have no idea.  I suspect this is going to be quite a learning experience for me, thank goodness I have some people to help me.  What an eye opener to see what happens when one doesn’t have long term care insurance – now I really understand why it is os important.  Eddie just qualified for it and also got a discount, so I know he is taken care of in case he needs some help.  I don’t qualify because of RA, so I need to figure something else for me – possibly a money market and laddering CDs.  Right now I need to focus on Mom.

I have been doing out patient therapy for 3 weeks – the first two weeks I was still at the hotel, last week I was here and my friends really came through for me by giving me rides there.  I chose to go back to Stafford health Care because I know the therapists and they know me – I didn’t want to break in a new set by going somewhere else.  They weren’t kidding when they said out patient therapy was more aggressive and there will be pain – what an understatement!  But I know I need it because the right leg muscles are weaker and I need to strengthen them so I can stop walking like Walter Brennan.  I have had mostly thigh and groin pain, though the hip has had its share of discomfort.  This week has been more uncomfortable sleeping, I can turn on my side and sleep on the healed hip.

Thursday was a red letter day because I saw my surgeon.  I wanted to drive again and was hoping he would give me the okay.  Eddie came with me because he wanted to talk to the doc because he is also an Armenian.  The doc took an x-ray and told me he is very pleased – the hip has healed perfectly and the plate and screw has stayed exactly in place.  Couldn’t think of better news unless it was when said I could drive when I felt able.  Whoopee!  I was anxious to try but also a bit apprehensive to experiment – finally I tried on Friday around the neighborhood and it felt fine – almost as if I had just driven the day before.  So I am now on four heels again, but not the wheely walker!  I am using a cane and the doc was happy about that.  He told me not to be in a hurry to  stop using the cane and I agree – it let’s people know not to bump into me.

A low point for me was on Wednesday – we went to Barnes & Noble for coffee before going to the doc.  I went to use the restroom but the handicap stall was being used. I was concerned about one of the regular stalls but went ahead and used one.  Well, I couldn’t get up!  I tried whatever I could but it didn’t work.  Finally the woman using the handicap stall was on her way out and I asked if she would help me.  She was so sweet, she pulled me back onto my feet and I thanked her profusely.  I told her how much I appreciated her help and she said we all need help at one time or another.  She had twin girls who didn’t look more than a few months old, so I suspect she has had a lot of experience with help.  Looks like I am changing my old childhood programming slowly but surely.

It has been an interesting week – this coming week will be my first mobile week in 3 months.  I am going to finally have a haircut – I know Michelle with be horrified at the hacking I have doe to it, but needs must.  I am also going to have a massage again, boy have I missed those.  I have three days of outpatient therapy as well – pretty well fills up my dance card for the week.  I think my ambitions out strip my energy – I will have to work up my stamina.  It feels so good to be mobile again, it is hard being dependent on others for rides.  I have also found through this journey what good friends I have in my Breakfast Club and other friends.

Finally Home Again

May 20, 2012

Yesterday morning all three of us came home for good – the bathroom is almost done, the shower doors will be installed on Monday and the last few details finished.  So it is spit baths for a couple of days and then it will be a fully functional bathroom.  In some ways for me, I don’t feel I have been home at all – yes there were those 3 or 4 days between leaving rehab and living in a hotel.  I have felt temporary for the last 3 months or more since I was taken out feet first to the hospital on February 24th.  It has been an interesting journey and experience – still going on too.  I am curious to see what changes have happened inside me, right now I think it is too early to tell.  Maybe others can see changes from the outside, I am not sure.  Right now it is another adjustment coming home for good at last.

Everything is the same, yet different.  First off, there isn’t the room in the sink cabinet that we had before and there isn’t a shelf unit above the toilet any more.  That means figuring out where everything goes and what can be thrown out or given to St. Vincent so someone else can use it.  I also realize how crowded with stuff the office and our bedroom are – I know I am a pack rat and this has certainly brought it home to me.  There is the thought in the back of my mind, “What if I need it later?”.  It is that “just in case” mindset even if it turns out I never need it again.  Maybe it is simply that the rooms seem smaller than they were before and  I know that in order for new things to come in, I have to clear space for them by clearing out the old.  I realize a lot of things are from another life, a person I am no longer in this moment.  I will admit to feeling confused and unsure about who I am and where I want to go – it is as if I have been disconnected from everything I know for a long time.  Now that I am home I can reconnect – but now only with that which is truly me and what I want.

I also feel as if I am in transition with my business, I don’t quite know what direction I want to take it.  Over the past few months with my life narrowing so much as Mom was not able to be left alone, then breaking my hip, my business is almost at a standstill.  I have been thinking since last fall, it’s a good time to rest, regroup and redefine what I want to do.  The only problem seemed to be with me, I was so bone weary and mentally and emotionally exhausted that I haven’t been able to think straight.  I haven’t had the energy or interest to do anything about it.  When I went to rehab, I thought I would have time to read and write to help me see where things were and where I was heading.  Unfortunately I was so tired I had no interest in any of it,  so tired and dragged out – what I call “drag my ass tired” – I couldn’t even think about it.

Physically I am doing a lot better, I am walking with the cane around the house and for short distances outside.  I feel more independent with the cane, plus not so much hardware to put in the trunk .  But I still need to use the wheely walker if I am going to the store or longer distances – the therapists think I can be back walking without anything as I did before I broke the hip.  The one thing that is most frustrating is not being able to drive, to go and do whenever I want.  I am dependent on rides to therapy and I will say how grateful I am to friends who have been there for me.  It was hard to ask for help when I went back to my networking breakfast club because I have always done things myself.  It was very difficult to change a lifetime of “Don’t ask for help”, “Don’t impose on people or be a burden”.  Thanks to my older sister Ellen for her words “Ditch it, Girl” when we discussed it awhile back.  In many ways I have become very aware of some childhood programs in the last few months – I had no idea about specifics, I was just going on autopilot and didn’t really know it.

Outpatient physical therapy is more aggressive than inpatient – I really notice it when I am finished.  Michael puts me on the cross trainer first, just with the foot action.  It has intensity settings from 1-10, he jacked up to 8 on Friday.  So the resistance is more and I feel the workout in my legs.  I think he plans to have me all the way up to 10 by the time I leave.  He is helping me with balance and strength as well as being a bit faster in my movements.  We are doing moderate difficulty on “Stomp the mole”, it is a 9 square grid and when amole pops up, I have to move my feet to the proper square to stomp it.  They also have a mouse that moves from one square to another and they are also to be stomped.  However, not the lady bugs, but they tend to get stomp unintentionally – I don’t always  notice them while trying to get the mice and moles.  He isn’t really concerned with my score, he wants me to be able to step from one square to another a little faster each time so I have a more smooth movement.  Mostly when I feel I have loosened a tight muscle and it is comfortable again, Michael finds another couple I didn’t know I had.  Like everything else, it is a process.  Glad to be at this end than just starting to stand and walk again.

What A Difference A Week Makes

May 17, 2012

I have been living in a hotel for three weeks while our bathroom is remodeled.  It will have a stall shower, higher toilet, new sink and vanity, a lot more light and even an exhaust fan.  Unfortunately the hotel is costing more than we planned and also the stay for my Mom at the adult family home.  I am hoping we can all come home Saturday.  In the last 12 or 13 weeks I have spent 3 or 4 days at home, so in some ways it doesn’t feel I have been home at all.  However, since my fall and broken hip on February 24th, I have been able to walk again after 8 weeks of rehab and 2 weeks of out patient physical therapy.

Last week in therapy they started me walking with a cane and on Tuesday Michael wanted be to bring a cane for the next day.  My good friend Carol has been so great at taking me to therapy and breakfast club plus we stopped at Walgreen’s to check out canes.  Now I always thought if I ever had to use a cane, I would get an elegant, cool one – not this time.  However, I will be on the look out for a cool one from now on until I find the one that hits me.  Even so, the one I chose is good looking and sturdy, plus I can always bling it up a bit.  So now I am using the cane to walk around the hotel room – Michael wants me to get used to it and use the wheely walker for long trips or going into the grocery store.  it feels so good to be less encumbered, I even find myself walking without the cane in my room.  I still walk like Walter Brennan without a cane or walker – but it feels a little less than before – or is that wishful thinking.  I want to feel more confident with the cane before I go out in public with it – the walker makes me feel a little more secure at this point.

The other surprising thing is finding myself doing something I haven’t done for a long time – I was drying myself off and didn’t realize I had my foot on the toilet to dry my leg – it was as if my body took over and knows what she can and cannot do.  It felt so good!  I think I am more adventurous now instead of being timid when it comes to moving.  I can now turn over on my side and I even sleep on the right side – the repaired side.  I am also sleeping better the past few days, I don’t toss and turn and change positions so much.  I am sure Eddie will appreciate that since I kept waking him up when I had to move.

I am also more flexible and loose than I was – not hard to do since Ihave been very tight for quite awhile.  I want to find a very beginning Tai Chi class that also teaches the mind, body and spirit connection – it will be gentle but help me to loosen up all my tight muscles and tendons so I am more flexible.  I want to go back to my deep tissue massage as well as start back with my chiropractor – she helped open me as well and I miss not working with her.  And of course, it  is long past time to do something about my weight – I want to wear my clothes again and take some weight and stress off my joints.  Since I didn’t have much in the way of sugar for 8 weeks, it is a good time to let go of sugar and sweets.  I realize I have mostly gained belly fat – not easy to admit – though I see it in other places as well.  I had decided when I turned 60 that the last third of my life would be different – at 65 I see a lot of changes I have made in the last five years.  Always more to work on and not always comfortable, but I am determined to be the best I can be.

Two Weeks Out of Rehab

May 12, 2012

It’s been rather an upheaval since I came home from rehab – though today is a stellar day because it is our 43rd wedding anniversary.  When I think about what I was doing 43 years ago, I realize how young and inexperienced I was even though I thought I was terribly mature.  I often wonder how I would have handled living in Australia if I had today’s knowledge and experience.  It certainly made me grow up, plus Eddie and I developed a closeness in that tiny farming town that has lasted all these years.  Our life together has been interesting and challenging, I am so grateful Eddie chose to stay when I was diagnosed with RA, as well as all the other things we have had to face.  There are other men who would have left because they weren’t willing to deal with any of it.  So this is a doubly lovely anniversary.

When I left rehab, I came home to the house – I wasn’t sure how it was going to be getting around the house with the walker.   It turned out better than I expected, though I was moving very carefully and slowly.  Unfortunately I had been away 8 weeks and Mom had forgotten I lived there – also mostly had forgotten who I was.  For the next few days she seemed to treat me as if I was made of fine porcelain or spun glass, constantly asking if I was all right.  On Sunday we all packed up and left the house so Brad could start demolition in the bathroom.  We found an adult family home for Mom and I am living at a hotel at the airport – Eddie spends some nights with me and sometimes sleeps at the house – there is water for the bathroom downstairs.  However, we haven’t told Mom that because she would want to come home too.  She is not happy about being at the adult home but there isn’t anything we can do about it.  It looks as if it will be the end of next week before we can come back to the house.  We hated telling her when we saw her yesterday afternoon, she is bored and not happy there.

I am here at the hotel mostly by myself and no car – I can only go out if someone gives me a ride.  It’s hard to be dependent after being able to go and do whenever I want when I want.  Carol took me to Breakfast Club last Wednesday and this week after Breakfast Club I went to outpatient physical therapy.  Tuesday Pat Murray took me to my first outpatient therapy – driving a honking great Suburban that I had to climb into.  Then he picked me up in a VW Beetle – he had to pull me out of that one.  It was a bit hard asking for a ride but I have found they are are all quite happy to do it – they are true friends.  It was fun to go back and see friends at the gym, though it felt a bit different since I could leave when I was finished.  Tony did an assessment and I scored well on it – still things to strengthen and do so I am not dependent on the walker.  He had me walking without my walker – I did warn him I walk like Walter Brennan.  Unfortunately he didn’t know who that was, so I had to explain.  I did okay, then he had me walk with a cane around the circuit – out one door, down the hall and in the other door.  Rather an interesting experience.  On Wednesday I was working with Michael, helping me with balancing and strength along with stretching.  I don’t want to use the wheely walker for the rest of my life all the time, so I am determined to work as hard as possible to go on my own steam.

Staying at home was not as difficult as I thought it would be – Mom’s caregivers came and that made a big difference.  I want to continue that as long as possible so she has things going on for her and I can have some quiet time.  After 2 weeks in a hotel with no way to get around, I am frustrated as all get out, tired of feeling useless and helpless because I can’t drive and accomplish some things so Eddie doesn’t have to do everything.  I will see the surgeon on May 23rd, I hope he will give me the okay to drive.  I also think I may have to practice a little before  going out in traffic, it has been almost 3 months.  Yes, I know This Too Shall Pass, I’m just impatient for it to pass.

Eddie comes by most days after work, sometimes he is so tired and just sacks out at home.  It feels as if there are so many things that need to be done that we are running from here to there.  We seem to spent time eating out a lot, not the way we usually eat.

Rehab and RA

May 4, 2012

I had quite an experience while in rehab for 8 weeks – unfortunately when I was in the hospital under the influence of pain killers and who knows what else, it took a while to realize I had missed some very important information.  The surgeon apparently told me he was stopping my Methothrexate so the wound would heal faster – I don’t remember hearing that.  I had not had it for a week when the fall happened and then about 2 weeks later I woke up one morning with the most miserable flare up I have had in a long time.  When it finally penetrated that I hadn’t had metho for 3 weeks, I kept asking questions and let them know I was pissed off.  Finally I got the message and realized I didn’t remember anything about it.  So not only was I constantly telling the therapists that I was worried about not messing up my shoulders and hands, then I was dealing with a flare up.  Now I will commend the therapists for working with me to prevent as much problem with those parts while I was learning to walk with toe touch.  I could only put my toe on my right leg down to balance but not put weight on it.

I know there were many times when I did put a little too much wieght, it isn’t easy not to do it.  The weight had to upperbody strength and I will confess I didn’t have much at the time.  I was given exercises for all parts of my legs, for my arms and anything else they could think of that could be done in a wheel chair.  I was having such a hard time with the toe touch walking in a regular walker, I was determined to master it if it killed me.  It was probably getting on to almost 5 weeks before I started get the hang of it – I knew that because I didn’t hear the therapist checking weight bearing,  reminding me of toe touch, saying good step more often and of course, less reminding me of “spaghetti leg”.  What bugged me was the comment that once I learn how to do it, I won’t have to do it any more – I kept wondering why I was doing it at all if I wasn’t going to need it.  It simply meant that when the surgeon gave me weight bearing status then I could walk with both legs and not deal with toe touch.

I was so appreciative of one of the occupational therapists, Carol, for giving me hot packs for my hurting shoulders and hot paraffin for my hands to elp relieve some of the pain.  They were all very caring and concerned about me – as they are of all their charges – but were also rather hard assed about things I could do I wasn’t sure I could.  I remember when I first stood up – I was scared of so much and Tony was there to keep me going and was very encouraging.  I slowly began to walk a few steps and of course there were always exercises for muscles, tendons and such.  I was so proud of myself the day I went around the circuit at one go – 60 feet.  I was really winded when I was finished, plus I had to stop and rest twice.  What I found was that each time it was easier and I could go a little farther.  I walked around one of the halls next to the gym for quite a few feet – it felt as if I was doing it without a net.  They always made sure I had a gate belt on so that they could catch me if I got in trouble; that gave me a secure feeling.  I was able to do 130 feet by the time I saw the surgeon the second time – 6 weeks after surgery.  He gave me weight bearing as tolerated status, so things got more intense and instead of being in a wheelchair all the time, I used my wheely walker.  They decided I could be independent and walk anywhere, plus go to meals.  That felt so good, to be able to do things on my own again.

As for the methotrexate, I finally started it again about the 3rd week I was there but it took 4 or 5 weeks for it to kick in again.  It seemed to take forever to feel halfway comfortable again, plus my hands  developed blisters and new nodules from wheeling myself around.  When I first was able to wheel myself, my personal goal was to wheel myself from my room to the dining room.  My room was at the other end of the hall and it looked a long way to go.  But I worked at it and finally accomplished my goal.  Now I will admit when I was having a bad morning because of the flare up, I accepted a push because it was hardest in the morning – it was better in the afternoon and evening.  I learned how to turn and few other things, so by week 6 I was going a bit faster than in the beginning.

I will admit to feeling really tired and lousy most of the time, no energy or interest in anything.  I was bone weary as well as mentally and emotionally exhausted when I went in, so the surgery and ehab was just more piled on.  I have been home a little over a week – well, a few days and now I have been at a hotel for almost a week while the bathroom is being remodelled.  Still tired but I was pleased to find on Monday I felt like reading a book again.  I wasn’t interested in doing anything for those long 8 weeks, so reading felt so good.  It has been along journey and I am curious to see the changes and effects it has had on me – maybe in the coming months.


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