Archive for March, 2016

1st Barbecue of the Season

March 27, 2016

Friday I had to go to Wound Care again – what a lovely day it was.  Eddie left in the morning for work with clouds a bit of rain; when he came home to pick me up, the sun was out.  For the first time in a long time, I had the car window open and it felt quite warm.    More rain today and tomorrow, then they promise the sun for several days – does Mother nature agree?  We will see.

I am back wrapped up again – my legs swelled again – and wouldn’t you know, my compression socks arrived and were sitting in the mailbox as we drove out.  Well, I won’t be wearing them for a couple of weeks, then I will take them with me to have them help me learn how to put them on.  This means spit and duck baths again; so far the hair doesn’t look too bad.  It does tend to stick up a bit when I get up in the morning, I will have to run the shower with my head in to have the steam tame those wonky parts.  I have an appointment on Wednesday afternoon to remove sutures, then I can lean over the shower chair and wash my hair at least.

My forehead has been numb since the first plastic surgery, yet at times I feel it tingling, sometimes as if something is walking on my head.  It is an odd sensation but not unpleasant.  I asked the doc about it last Monday before surgery, he said it will take a long time to  go back to normal.  I expected that answer because I found that with the hip incision.  It was numb and I would get sharp pricks when I least expected it – that was unpleasant.  Seems to be  fairly normal now, four years later.

I am determined to drive again after Wednesday, I don’t like being so dependent – at least I can see a lot better now, that makes a difference.  When Eddie comes back from the Car Museum, he is taking me to Bartell’s – it is sometimes difficult to explain to him what I want.  I think he is very uncomfortable buying “lady things”, but does a pretty good job.

Yesterday was fairly sunny and when Eddie came home from shopping, he had hamburgers with him.  He decided to start the BBQ season and I noticed Eric across the street had his big grill on his deck.  Eddie said he could smell someone else getting ready to BBQ.  We have had such a lot of wind and rain this winter, it feels good to look forward to spring.  Each time I go out, I see new things blooming – I almost feel I am missing out on spring.  The Scillas in the beds have abundant leaves up and it will be fun to see all the lavender flower stems blooming.  The grape hyacinths are blooming, not as many this year and the two clumps of yellow daffodils on the bank are doing well

My sister Ellen on the Jersey Shore has had rain, snow, sun and wind – I’m so glad she sends photos of them.  The last photo I enclosed in the blog is now a painting – she is so talented!  She is able to show the ocean in so many different moods and colors – so amazing.

This was the Nor’easter the other week – she had snow as well as windy.

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This was on March 24th – spring is coming.

I have been so self absorb in myself lately, both my sisters reminded me March 24th would be Dad’s 102nd birthday.  I also thought about September 24th, Mom’s birthday – it will be her 98th.  In 2018, it will be her 100th birthday and that year was as eventful as Dad’s in 1914 – so many historic things happened that changed the world during those years.  Because they met, fell in love and married, my sisters and I are a part of this changing world.  They gave us so many gifts – being loved and wanted, integrity, respect for other people, discipline, manners – so many things that have given me a strong foundation.  (I won’t speak for my sisters)  I am grateful for all of it, they were very loving parents.

A blog wouldn’t be complete without a couple of photos from my sister Candy in Nashville.

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She puts lovely backgrounds in her photos

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She has done a series of Christmas photos with flowers and also ornaments.

I have been sleeping a lot, though I still feel draggy,  I need to walk a bit every day – exercise needs to be part of being rested.  I have hesitated to go outside and walk up and down the sidewalk because I don’t want to trip and fall.  Now that I can wear my glasses better, I am willing to give it a try.  Windy and stormy is conducive to walking outside – I seem to have missed the worst of the weather during my captivity.

My posts have been so “me” centered, it is time to focus on something else for a change.  Wishing you all a very Happy Easter.

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Final Nose Surgery Done

March 24, 2016

I feel as if I have just been wandering around the last couple of days with no idea what I needed to do.  I am feeling more coherent today, feels so much better.

Monday the surgery was for 3:30 in the afternoon, I had to be there by 2:30 to check in and register.  I could have something to eat before 6:30, so I had a couple of pieces of toast and a banana, later I had some coffee before 10:30.  I felt a bit strange because the other 2 surgeries were in the morning.  I was so ready to have that pedicle removed and the doc was pleased with how it was healing.  I also told him about the suture and he was going to check it out for me.  However, it will be a long time before my forehead is no longer numb – I expected that answer since my hip incision was numb for quite a while.

This time it was only an hour surgery, so it was after 5 when I was awake and dressed.  I cannot wear my glasses more easily because I have two small bandages and the bridge of my nose is between them.  However, the doc won’t let me drive until he sees me next Wednesday afternoon to take out sutures and  see how it looks.  Today I can now change the bandage and see how it looks – not all that anxious to see. I was put in a wheelchair and whisked to the car – fairly smooth ride.  We stopped at Bartell’s on the way home to pick up my antibiotic script – another 10 days of 4 a day.

I was rather out of it, a bit groggy and figured I would sleep very well.  They gave me a Percocet after surgery and said to do one of the Vicodin around 8:30.  So I did and as a result, I was awake all night.  I wasn’t uncomfortable, but I also wasn’t rested either.  I could really sleep late in the morning because I had an appointment with my new rheumatologist, Dr. Gorman.  Eddie took me and also came in with me to meet her – she’s young and seems very nice.  She doesn’t need to see me every time I do Orencia, but I will see the nurse practitioner in a coupe of weeks for my infusion.  Dr. Gorman is going to see if Remicade or Orencia works better with basel cell cancer – Orencia has been all right but I think I did better on Remicade.  We’ll see what happens.

Eddie left for his meetings and I had something to eat – it was 12:30 when we came home.  I planned to have a nap but  somehow forgot about it – not sure how that happened.  Maybe I was operating on autopilot.  I did sleep well Tuesday night, but still was on autopilot for the day.  I slept well last night and I am beginning to feel more myself.  I have noticed I am more comfortable in my body – is it all the prednisone or because I haven’t had Methotrexate or Orencia for several weeks and my immune system is working?  I notice my cough is pretty much gone – it has been hanging on for months.  I did lose 11 lbs of fluid from my leg; now I have to go back to wound care because other parts of the leg are a problem.  No idea what’s happening.

I can take showers, though I won’t be able to wash my hair until sutures are out.    I am waiting for my compression socks to arrive, I hope that will help the leg.  If they wrap the leg up again, I will be doing spit baths again for a while.  One thing about being stuck at home is not having to deal with all the rain and wind.  Last summer I was inside during the hot weather, now I am in during the cold, wet, rainy weather.  The only time I go out is for a medical appointment – I’m not quite ready to face the real world yet.

LATER

I had a shower and finally changed bandages – not too bad – though the new nose part is a bit bruised and swollen, it should go down more each day.  My left eyebrow looks a bit mangled, no way to tell for sure until the sutures are removed.  I didn’t really do a great job of re-bandaging, it will take some practice to figure out angle and size, as well as where the adhesive fits well.  By then I may be free of sutures.   I am glad to feel clean again and the steam seems to tame the parts of my hair that want to stick up.  I’m hoping the hair won’t be as ugly as the first surgery.  Vanity, all is vanity.

Tomorrow Is The Day

March 20, 2016

Thank You for the lovely flowers Candy.   Ellen’s photo is at the end

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It has been 3 1/2 weeks since I had the first 2 surgeries for the Basel Cell on my nose – one for MOHS to remove it, the second to create a new nose.  Tomorrow the pedicle (skin flap from my forehead) will be removed and things will be in the right place.  I am hoping I can wear my glasses better – it has been annoying not to be able to see very well for this long.  The following Wednesday afternoon, sutures will come out.  I have no idea how soon I will have to do the right temple – I would like a bit of a respite before doing another round.

This time the surgery is in the middle of the afternoon, that makes eating and drinking a bit more tricky.  I can have a light breakfast – no food after 6:30 a.m. and clear liquids until 10:30.  Check in time is 2:30, surgery at 3:30, finished by 4:30 and recovery by 5:30.  Last time Eddie went walking around but didn’t like the area, so he is planning to take his book and read.

I have gotten better at doing a bandage for my face – some days it goes really well, other days it is a mess.  The surgery and pedicle look much better now – it’s my frustration level of not being independent and free to come and go as I please that bugs me.  I am feeling better, some more energy and I find I am sleeping better.  Now that could be the extra prednisone or I am really doing better.  We’ll see when I am back to my usual dose.

I am due to see my new rheumatologist on Tuesday – it is a short get acquainted visit, I won’t be getting Orencia at that time, just make an appointment for it.  I have been off it and Methotrexate for several weeks to help the surgery heal – I will have to start in again very soon.  From what I understand, she won’t require seeing me every time I do an infusion but will make sure she knows what is happening.

Other news, I went to wound care last Wednesday and they declared me healed of the ulcer on my leg.  I ordered some compression socks that I need to wear to help prevent anything else happening – they are on their way.  I have a waterproof bandage on and they said if there is any oozing, call them right away.  I have to change it today and I am hoping there is no oozing.  They gave me a slight compression knit thing to wear until I have my socks – I can take it off to shower.  I can now have a proper shower and wash my hair – I am enjoying it because I didn’t feel properly clean before.  I won’t be able to get my new incisions wet for 10 day – that means ugly hair for 10 days.

Yesterday I put together Eddie’s blog to send out today.  Our editor didn’t respond when we sent to him for proofing – it worries us because he has been sick and we wonder if he is much worse.  Eddie tried his cell phone – can’t find his home number.  He such a great guy and always enjoyed doing the blog post for us.  Update:  I looked him up on the internet and I think I found his home number.  When Eddie gets back from the Museum of Flight, I will see if the number looks right.  Too bad I didn’t think of it sooner.

I haven’t put any pictures or photos in my blog posts lately – my sisters both send me lovely ones and it is fun to share them with all of you.  I also have to say a huge Thank You to my friend Charlotte because she came to visit a couple of weeks ago when I most needed a lift.  Not only that, she brought lunch – our infusion of salt, fat and caffeine.  Most importantly she brought herself and we had a good time, eating, laughing and talking. She was such a breath of fresh air and sunshine – even though it was a cloudy day.  In some ways I feel as if the world is passing me by.  I only go out for medical appointments and Eddie has to take me.  I really depend on him and I am sure this has gotten so very old for him.

I haven’t made a decision about the shoulder surgery, I am cleared for a second opinion.  I have someone in mind and as soon as I am out and about again, I will make an appointment with her.  I also have to do a mammogram and eye check up as well.  My business has gone to pot since all of this started, it is time to regroup and decide what direction I want to go.

That about covers it for the moment, not sure it is a very interesting or entertaining blog post – there is something about writing it down that really helps me deal with it.  I hope it has something positive you can use in your life.  That is the whole purpose of the blog, to be of use to people dealing with a difficult situation. There is a gift in it – not sure right now what my gifts are yet from all the things from the past 4 years.

 

I feel as if I am on the rock watching the water myself.  I am a big water watcher.

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Stuck in the house again!

March 13, 2016

I haven’t been able to write or read much the last two weeks – I had to have surgery for the Basel Cell cancer I put off taking care of promptly.  It was on the end of my nose and now I have a new nose on the right side.  It was very deep and they had to take a skin graft from my forehead and use that to create the new half.  The first part was the MOHS surgeon used a local for the procedure – a very, very uncomfortable process.  He took the cancer and found there were no roots, then bandaged me up with a kind of round bandage on my nose.  When I saw it, I thought I could paint it red and say I was an off duty clown.

The next morning was the reconstruction surgery, this time a general anesthetic.  Thank goodness I didn’t have to feel that!  Unfortunately I have not  been able to wear my glasses very well because the pedicle (skin flap) is along my nose and part of my forehead.    As a result, my world has been blurry for the past 2 weeks.  I can see things, just not clearly – someone turned the focus dial down.  This coming week I will have surgery again to remove the pedicle – they wanted it to  stay for 3 weeks.  The two  things I am not happy about are:   1. the nose mustache because they had to go up a bit into my hairline.  2.  The nerve in the pedicle is up on my forehead and that is where the pain is – feels as if I keep being stabbed with an ice pick.

When I first took the bandage off, I was horrified to see how drastic it was.  I have a scar down my forehead in a straight line, from my hairline to my eyebrow.  Then there is the patch of new skin sewn around the right side of my nose.  The pedicle was still bandaged but looked awful – I felt like a train wreck.  It was so depressing and scary.  I am as vain as anyone and I felt as if my face was cut up and it would look terrible – I have kept the bandages on because I am uncomfortable looking at it.  I didn’t show it to Eddie.  I have had a long narrow bandage from my forehead to the end of my nose since it was done.

The week after surgery I went back to have the staples and sutures out – he was pleased, though doctors are always low-key.  His comment was the skin graft is viable.  I will admit, I have had no desire to be seen like this – a woman in elevator when I went to remove stitches commented ” They really trussed you up”.  I found I could smile and laugh about it.  Even so, I was glad to be home.  When I changed the bandage yesterday, it was the first time it did;t look very bad – I even showed it to Eddie.

I won’t have to go through all the hoops for the second part that I went through for the first.  They needed a pre-op from Doc Pierce, and EKG and questions, questions, questions.  No doubt we’ll do questions again, but I think all the other stuff I did is still valid for this surgery.  Then I will have to do another surgery for my right temple – that has been there even longer.  Not looking forward to that one.

The hardest part has been not being able to take a proper shower.  I have a small sore on my calf that is a result of a car door that  hit my leg.  Normally it isn’t a big deal, but it didn’t heal.  When I saw the dermatologist, she said it was an ulcer because I have had edema in my legs for quite a while and there is scar tissue.  So every week I go and have the bandage change – they do a compression wrap to help release the fluid.  As a result, I have lost 10 pounds, though all this sitting around and not being able to do stuff has probably added some more weight.  She had me do a vascular ultrasound to see how the veins are doing.  I went for the ultrasound and now you can hear it as well as see it.  Really cool.  Fortunately my veins are fine, no reconstructive surgery for them.  But I can’t get it wet and that means spit baths ( the tech at the wound care center called it a duck bath.)  It was really bad the 10 days I couldn’t wash my hair – oh, it was ugly and felt terrible.  I used a dry shampoo a couple of times, but it really isn’t that great.

Life is rather limited at the moment, I have been catching up on old movies on TCM – some I have seen, quite a few I haven’t.  I like those movies better than the ones now – great entertainment without a lot of “message”.  Eddie bought Lily Tomlin’s “Grandma” and of the 6 trailers they had, only 2 looked interesting.  Usually none appeal to us or only 1.  If I write any more, it will end up being whingeing and that isn’t part of my blog.


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