Archive for August, 2012

Dragging My Ass

August 24, 2012

Since I promised there would be no whingeing, I will just say that the last couple of days have been a try low point for me – not quite sure what is going on.  I do know the side effects of the drug in the study really wiped me out and I am no longer taking the drug.  Still another exit interview next week before I am done.  The frustrating part was I noticed improvement in some things and they told me Wednesday my Sed rate had been going down.  Must not be right for me.

I called my friend Carol today to see if she could meet me for lunch, think goodness she was.  Turns out she was having a crappy day and meeting for lunch got both of us out of our jammies.  I could have stayed at home, maybe had a good cry, but I didn’t want to do that – the thought of it made me feel low.  So lunch with Carol was fun and we both feel better.

Something else to make one smile – cats.  I ran across this on the web somewhere that shows cats just at the optimum moment when a camera was around.  Some are funny, some are amazing and cats always make me smile.

This one looks as if he had been shot out of a cannon!

Does he realize he is going in?

Play time is different for everyone.  Bet he is sure it’s a home run!

Nackered by a computer mouse!

There are no strings or  devices – it’s pure magic.

One last one – who is more surprised!

I knew the cats would help me smile and laugh.  I would rather show these than write about all my feelings of “oh-poor-me-osis” today.  My massage therapist just lost her mother on Wednesday – she died of cancer.  It was expected but I think it may still have been a shock when it happened.  I called her today to let her know I am sending her very special Lee hugs and anytime she needs one, it will be there for her.

Last night when I went to be, I decided to feel the feelings, be willing to accept that was how I felt in the moment and then let it go.  I also asked for an attitude overhaul.  The one thing that surprised me yesterday afternoon when this depression hit – I was thinking all these negative thoughts.  Then I stopped myself and knew it wasn’t true.  Yes, it was how I felt at that moment, but it isn’t the truth of my life or myself – that is new for me.

Enjoy the cats!

“Hey Up Lee! Put On Your Listening Ears!”

August 19, 2012

Life has been most uncomfortable this past week – although it is a double blind drug study, I think I have been taking the drug.  I doubt a placebo would give me headache, upset stomach, gas, bloating, cramps and constant diarrhea.  It has intensified this past week, the first two weeks were a symptom or two at a time.    I will be honest, I have been miserable and drag my ass tired because I have been afraid to go to sleep and then have an accident in the bed.  Most of the time it has been right after dinner when everything starts, during the day it has been okay except for headache and gas.  Enough of that!

  Since Saturday I have been having a lot of side effects from the drug study – I figure I have the drug because no placebo would do this to me.  It gives me headaches, upset stomach, bloating, gas,  cramps and diarrhea.   In the beginning it was a bit here and there, but Saturday early morning it was intensified.  I felt as if I had a migraine and it upset my stomach and it always seems right after dinner when the diarrhea starts.  I called Carey on Monday to let her know and she suggested stopping the drug for a couple of days.  So I did, but it didn’t make any difference, neither did the Imodium.  I started it again Wednesday night and it seemed to make everything even worse.  So I have reached my limit – this is a deal breaker.  I don’t like quitting something I promised to do, but my body is telling me she is not happy and to stop already!  I will call Carey this morning and see if she wants me to continue on the week of blood pressure monitoring and then bring the equipment back on Tuesday.  I am disappointed because I was beginning to notice some improvements, but not enough to offset the side effects.  They did tell me they have other studies, so who knows what else may be in store.

Since all of that was going on, I wasn’t sleeping very well, scared I would have an accident in bed isn’t conducive to sound sleep.  Wednesday morning I went to my breakfast group and then to the eye doctor.  I have  the beginning of cataracts and they want to keep an ye on them – so far they are developing very slowly, so I am not going to have to have surgery yet.  by the time I was finished, I was so tired I could hardly  keep my eyes open.  I came home and went to bed, slept with Bunny for 2 1/2 hours and still didn’t feel rested – but it was better.  Yesterday I was so tired I couldn’t keep my eyes open and was ready for bed at 8:30 – only to find myself making 6 – 8 trips to the bathroom.  Guess who was wide awake?  I sat in my office chair for 2 hours, going in and out of sleep until after midnight.  I finally felt I could go to bed and I would be okay.

The interesting things about it is for the the first time I started thinking about this whole thing in terms of my body.  I have different drugs for RA but this the first time I have had such difficult side effects.  Now I am wondering if my body is telling me something (Get a clue Lee!).  I remembering thinking I wished it wasn’t a drug but I was elated to notice some benefits, so I forgot about those thoughts.  However, it has taken quite a lot to finally get my attention.  I was telling Debye about it when I had my massage on Thursday and she told me to check in with my body and then decide if this is for you.  I haven’t been doing that, I just want the RA gone but not examine the consequences.  I have also become more aware in the last few months and years, now I am learning a new way to see things and at times I feel I am a very slow learner.  This has certainly given me an education – an advanced course – in listen to body, mind and spirit more.

I’m In Need Of Some Encouragement

August 14, 2012

I checked out my new source of encouragement again because it has not been the most comfortable weekend.  I think I actually have the study drug because I have been having very uncomfortable side effects this weekend.    So I have been feeling down and a bit sorry for myself.  So I found some really great  things from Calming Your Inner Storm

I have been feeling less than beautiful and attractive lately, so this was a wonderful way to view myself

Then I saw this one

This one rather suits my mood

And when I think about my current situation, this helps

When I get scared, I need to remember

There are those times when I suffer from foot-in-mouth syndrome because I say what I am thinking

A little humor goes a long way for me

I am feeling better now.

Farther Into The Thin Places

August 12, 2012

Yesterday morning when my Mom got up, she asked me who she is.  It happened a couple of weeks ago and it really surprised me.  I know she doesn’t always know who I am, but she has always known who she was.  She is the most confused in the morning when she wakes up; later in the morning it is better but not always.  The other thing she said was she didn’t think she was in the right place – where the right place I have no clue.  I told this is her place right now and after going through a couple of times, she seemed okay.  At least she didn’t do her “never mind, forget it” routine.  There have been days when she seems to have one foot in this world and one in the next world, what my sister Candy calls the thin places.  Every day Mom goes more and more into the thin places – she wants so much to be on the other side with Dad, Josie the cat and her family – she is scared they really aren’t there.  My friend Monty told me they are preparing a place for Mom and because she will be confused at the beginning, she will have guides to help her through the transition.  I have told her this, she wants to believe it so much but I don’t know what scares her so much.

I have watched this very independent (and stubborn) woman become so tentative and afraid, asking permission to do anything.  She once said she used up all her courage to fly from Connecticut to California to marry my Dad right after Pearl Harbor.  I wonder if that was really true.  What I also realize is that is one of my childhood programs.  We were always taught to ask permission first before doing anything – except my younger sister was the one who at time would announce she had done such and so.  Where did that come from?  How did I miss that?  I definitely was brought up to be a good girl, follow the rules, ask permission, etc.  No wonder I have had a hard time trusting myself and following my heart.  I didn’t listen to my heart because it was different from what I learned at home.  Let’s face it, I wanted to be accepted, acceptable while not having the courage of my convictions.  Ye Gods & Little Fishes!  At 65 I am still that way in some things but I am breaking out of my shell and taking risks.  Well, risks for me.

I also notice how negative Mom has become.  She doubts everything and is convinced the worst possible scenario will come to pass.  She just left for a walk with the new caregiver and I said she didn’t need to take the house key, that I would be here and the house would be open.  She doesn’t think so.  Not sure what she thinks will happen but I suspect having the door key makes her feel more secure.  I am not going to try to persuade her to leave the key here, it isn’t going to make a difference but she will feel better having it.  I have grown up with that negativity from the time I can remember, but it has intensified so much the past few years.  I really see now how much I have absorbed that thinking for most of my life, now I am finally much more aware and recognize more often.  No, it’s isn’t all the time but I have also changed my thinking.  In the morning before I get out of bed, I thank and give gratitude to God, my Spirit Guides, Angels and Master Teachers for all I have been blessed with – comfortable and uncomfortable.    I will admit it isn’t whole-hearted yet – those uncomfortable  ones aren’t quite there yet.  I am a work in progress.

I also notice Mom tends to mumble and talk about things that make no sense, not even sure they make sense to her.  More and more I don’t know what she is trying to say, only that she gets frustrated and upset she can’t get the words out.  Then she goes straight to “never mind, it doesn’t matter!”.  She talks about other people in the house, I don’t know if they live here or just visit or if she sees them or only senses them.  She is confused a lot about who I am, yesterday she thought I was her sister.  She thinks Eddie is her father, my father, her husband – I wonder if it is because he is the only male she sees consistently.

I often wonder where my Mom is and who is this confused and scared woman living with us.  She looks like Mom but not much resemblance other than that.

Squirrel Wheel Week – Part 2

August 7, 2012

Doing stuff for Mom was not the only thing I worked on the last 2 weeks.  I signed up for the drug study for Rheumatoid Arthritis – a lot more stuff to do than I realized.  since they are doing it to monitor blood pressure, I have had a lot of blood pressure reading taken in several forms.  I have them at the doc’s office, then they sent me home with a blood pressure monitor and cuff, plus a modem.  I was to do my blood pressure twice, one minute apart in the morning and again at night.  The modem sends it directly to the group who does the monitoring.  Except it turned out the modem wasn’t working.  So Carey ordered a new one and we met halfway between to exchange them.  The following week I took the equipment back and had to do a 24 hour blood pressure monitoring – even 20 minutes.  So I had the cuff on my left arm, a belt with the monitor in a pouch.  This was about 10 in the morning, so it would be the following morning at 10 before I could take it off.  An interesting experience.  I didn’t really have much to do that day, so I came home and worked on things here.  If I was standing when the little beep went off, I had to sit down and wait for it to do its thing.  I will admit, I didn’t get much sleep that night, though after 10 pm the beep was silent until 6 am.  I went to Breakfast Club with it, amid questions.  The real bummer was having to fast until I went to the doc – I knew there were more blood tests coming. I was pleased that Brandy made a breakfast to go for me, I was going need some protein when I was finished.  After all the stuff Carey had to do, time was marching on – but I finally was given the drug.  They are bright turquoise caplets – not quite football shaped.  I took two then and then it is two twice a day for the study.   I didn’t think it would take so long and I ended up late for Mom’s evaluation.  Fortunately Kathy was there and I made it in time to talk to Linda before she left.

I went back again last week with my pill bottle – seemed a shame to get rid of them when I hadn’t used more than half a bottle.  Carey ended up giving it back to me for this week.  She also had me doing the blood pressure twice a day again, tonight is the last one.  I will take it back to her tomorrow and see what else she has in store for me.  I am not sure if I notice anything yet because there have been so many other things I have had to deal with that I haven’t really thought about it.  Mostly they are checking to see if the rise in blood pressure they have noticed in other studies will affect someone whose blood pressure is steady.  If so, they will have to make adjustments.

In the middle of all the other stuff, I was asked to do the 5 minute presentation on short notice, so I said I would.  Of course I had to do a self promo to give away – short notice self promos don’t always work out the way one expects.  I had seen a great idea using a prescription bottle with a really cool label, then filled with breath mints.  I didn’t have time to order the prescription bottles so I looked around and found some cool blue glass bottles.  They looked great when I put the label on – but the M&M’s were too big for the mouth of the jar.  So I found some Smarties that came in rolls, I figured two rolls would fill the bottle.  They went into the mouth go the bottle but the neck was too narrow.  I almost didn’t do the promo, then decided it was a good example of last-minute projects and why lead time is important.  I took two rolls of Smarties and taped them together, so they received a bottle and a set of 2 rolls.  Also my topic about follow up went pretty well but I ran out of time – good thing I had a handout.

To add to all of the other things, I bought a new Mac and an iPad.  I took my old one in to do a data transfer after I had bought an external hard drive to back everything up in case there was a problem with the data transfer.  I used Eddie’s laptop while mine was at Apple, I certainly missed it!  Now I have it back and it is working out pretty well, just some things I don’t know how to get working.  I bought the One to One for a year, now I have to figure out when I can go in for my hour once a week.  I feel as if I have been going at a dead run, but I accomplished everything I was scrambling to do.  I pat myself on the back for that.

I’m sure I have forgotten some things, they will probably come back to me at some point.  Oh, to add to the “I swear, there is a funny side”, Mom asked me the other morning when I was about to pour her coffee – “Are sure it is legal for you to do this?”  I told her of course, I don’t serve anything illegal here.   The big “They” lost that one.

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.


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