Gift of RA

The last few weeks have been very interesting and informative – ever since my dermatologist told me I have long-term edema in my legs with scar tissue, I have learned a lot.  The reason I knew about it was last November I had a car door hit me in my leg, near the ankle.  The sore didn’t get worse, but didn’t heal and I asked my dermatologist about.  she called it an ulcer and sent me to Wound Care to have it taken care of – it took a few weeks.  It resulted in having my left lower leg wrapped up in bandages changed every week.  Consequently, I couldn’t take a shower because I couldn’t let it get wet.  And since I was also doing the nose surgery, a shower was definitely out of the question.

The sore healed but I didn’t have any compression socks to use to keep the swelling down.  So once again, I am all wrapped up again, still looking at compression socks that will work.  The first ones I bought turned out to be too short and were too tight at the top – too bad because they were quite colorful.

That was a blow because my right leg is also swollen, so I really needed to find something soon because they think I may be able to take the wrapping off my leg this coming week.  I have been looking on Google for several days and I know Sockwell is a good brand.  I found some on Amazon with medium compression in black and also a stripe.  They are not cheap, but instead of $25.00, I bought them for $17.99 and they arrived on Friday afternoon.

Saturday I tried to put one on and by George, I was able to do it by myself!  During my rehab stay for the hip, the CNA had to put them on and take them off for me – I suspect they were firm or very firm compression.  I wore them all day Saturday and was able to walk around 3 shops without feeling really tired or sore.  My right knee has been the one that really gets me, but everything has worked rather well.  There must be something to the support as well as just compression to prevent edema.  It has been most interesting to find myself noticing a difference.    The other pair I bought was a grey chevron stripe – similar to this:

Not quite so fashionable, but if the black ones work, I figure these will also because they are the same size.  I decided on the Medium/Large just to be sure they come up far enough.  The trouble is they go by shoe size and calf circumference but don’t show how tall they are.  So it is a by guess, by golly to figure it out.  I am thinking of returning the too small ones and try a plus size to see if it will work.  If it doesn’t, I am not out a whole lot.

The other bit of news is our new big screen tv.  The one we had was Mom and Dad’s for quite a long time and it was dying.  It was still working but had intermittent troubles and the nice young man who hooked up the tv said he would recycle it without charge.  We also had another old one down stairs and he took that yesterday to where we bought the new one.  We decided to keep the little one in our bedroom for a while.

Eddie has ben talking about buying a new big screen for a year or more – he finally had enough money put away so we could pay for it – we put it on the credit card and will have the cash when the bill comes.  It is 42″ and almost fills up the table we use for the tv – one of these days we will find an entertainment center so we can have our DVDs stored in it.  We also bought a DVD player, a Blu-ray even though we have regular DVDs.  It’s also a Smart TV – whatever that means –  it remains to be seen who is smarter.

Eddie bought a Blu-ray DVD yesterday so we could see how it looks – the new Star Wars movie.  Interesting.  We are still getting used to it and how it works – still seems strange to watch.  The tv is ultra high-definition – though we don’t have high def on our satellite company – no doubt costs extra. So we will struggle a long for a while, but now we can watch DVDs in the living room instead of retreating to the bedroom on a small tv.

Ain’t technology wonderful!!!

WOW!!!!!  It feels so good to be independent again.  I had a great week, felt good and we had some very lovely weather to make it even better.  Sunshine and almost to 80 degrees one day.  Now we are back into clouds and possibly rain on Tuesday.  The scales are blooming all over, the  pink dogwood is slowly unfolding, the fruit trees are beginning to bloom and I don’t feel the world has passed me by any more.  I feel much more regular – I find driving is as if I had been doing it all along because I am not impeded.  When I started driving after my arm healed, I didn’t have much range of motion, so I was a bit nervous and hesitant.  I am so grateful to have my freedom back.

I have to pick up my life again, seems to have been on hold for the last few months.  I am going to get a second opinion about the shoulder surgery, then make a decision about it.  It is time to resolve it one way or the other.  I also have to regroup about my promotional marketing business and decide what niche I want to focus on – trying to do everything doesn’t really work.  Also, I want to find sponsors for my radio show so I can start that up again.  The hardest part of the last few months a years has been feeling drag my a** tired all the time.  I have been feeling more energy lately, something I had forgotten and I want to continue to build energy up as much as I can.

I have been going out without any bandages for a week and a half – yes, I have a crease in my forehead, a curved scar below and the top of my nose isn’t quite blemish free – and as long as I concentrate on what I’m doing instead of how I look, I forget about it.  I am also used to it, though I will say that my head is still numb but still seems to have feelings in it.  Sometimes if feels as if I can feel the blood flowing through and tingles.  As I said, it is not unpleasant and can be rather an interesting experience to just feel what is happening.

Enough of me, there has to be something more interesting to write about.  I have spent a lot of the last week alone because Eddie has been busy.  Tuesday nights are late nights and this week Friday was too.  Then Saturday he was at the Future of Flight to help Sandy with tours for the Geek Fest.  At the moment he is at the Museum of Flight for the second day of it, though he plans to leave around noon.  People were very glad to see him yesterday up north, he  is highly regarded there.  He does admit to missing aviation, though he is definitely learning a lot about investments.   Wherever he goes, he meets very interesting people and through one of them he hopes to help Vartan.  We met him and his wife Lyla at the Armenian Church in November, he’s Armenian from Syria.  As Eddie says, there aren’t many left and it is important to help each other.

Speaking of Armenians, the flare up in Nagorno Karabakh has been in the news lately.  Usually one doesn’t hear about things like that.  It is an interesting situation because it is a small enclave of Armenians in the middle of Azerbaijan – many of the Armenians at the church are from there.  That is also why they do the sermon in Russian.  In Armenia there is a small island of land in the middle full of Azerbaijanis – probably not as many  as there are Armenians in Nagorno Karabakh.  I wonder if they will ever be able to  solve it.  I was also surprised to see there was mention of the 100th anniversary of the Armenian massacre – something Turkey does not acknowledge happened.

When we were in Canada, we mentioned the Armenian Church and Raouf asked if we would see if we could have some Armenian translated for him.  He has a framed picture or banner in Armenian and he wanted to know what it said.  We took pictures and we asked Vartan if he could translate it for us.  And he did.

He said when we showed the picture that it was in a very ancient Armenian.

This is the translation of the Armenian sentence which has been written on the curtain.

“This curtain is for memorial of Varter, her son and his family, to  Bursa’s Saint Mother Of God Church.   Date 1244”.

We have a picture downstairs we bought, written Armenian; I need to take a picture of it and see if Vartan will translate it for us.

Time for me to wash my hair and get dressed – that simply means I lean over the shower chair to wash my hair very carefully but not get my leg bandage wet.  So I am still in spit bath mode.  It should end soon so I can have a proper shower.

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.

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

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.

Sometimes I am at a loss for a title for my post – this is one of them.  I may have to wait until I finish before a title comes to me.

An interesting week, a little too much medical but after surgery this coming Thursday and Friday, things should calm down.  We were invited to dinner on Sunday, Valentine’s day, by a couple we met at the Armenian Church.  He’s Armenian from Syria and I think his wife is Arab Christian.  They invited another couple, it was a lively time with their young children in the background.  Lyla doesn’t speak English very well – she is taking English class.  She was Civil Engineer in Syria, Vartan was an architect.    Right now he works in a deli making sandwiches.  Eddie had said to Vartan, make dinner simple – I think it is genetically impossible to cook small or simple.  Eddie’s family is the same way.  The table was loaded with salads, a dish of chicken make the Syrian way, grape leaves, meat with cheese inside, something similar to coucous, so much food.  I felt badly I couldn’t sample everything – I just don’t have the capacity any more.  When that was cleared off, a large platter of fruit, a huge cake, and two or three other desserts.  They could have fed the whole neighborhood!

Through networking, Eddie learned of an architect that is looking for someone. Vartan showed us his portfolio, not only for buildings, but also for furniture.  His stuff is really amazing.  Eddie talked to the architect on Thursday and told him about Vartan and his circumstances.  Eddie also explained about himself and and how he came to the U.S.  The architect was quite interested, so he wanted Vartan to send him some samples of his work.  There was an email this morning from Vartan to us and to Henry, the architect, with samples of his work.  We think Henry will be blown away.  So we are curious to see what Henry has to say when he sees Vartan’s samples.

Strangely enough, I had Monday and Tuesday at home – it’s been quite a while since that happened.  I worked on the expense sheet for our taxes and I need to organize the book to take to A.D. on Wednesday afternoon.  I always think I have a lot of time, then suddenly it arrives much sooner than I realize.  I will be glad to have the taxes done for another year.  Not much income from the business because of all the stuff from 2015, I’m hoping 2016 will be a lot better.

I had a call on Tuesday from the plastic surgeon’s office – they need a medical clearance from my primary care doc, there were all kinds of questions and then I had to call my rheumatologist to find out how I can deal with not having Methotrexate and Orencia before surgery.   I spent a lot of time on the phone this week.  Wednesday I went to Breakfast Club, then to see Dr. Cheryl, then to the orthopedic surgeon.  He says my shoulder is healed and there is nothing to keep me from doing the surgery.  I explained what is going on at the moment, so he has scheduled another appointment for 3 months for one more x-ray and time for me to have things done I need to do.  The more I think about doing the surgery, the less I want to – I am going to have a second opinion before I make a final decision.

Thursday I went back to the wound care center, I can see my ankle on my right leg.  I saw the doc for the first time and she was pleased with how well it is healing.  I told her I have to have a vascular ultrasound on Monday, how was the best way to do it?  She gave me a waterproof bandage and a light compression sock – they can take off what I have now, do the ultrasound and then put on the waterproof bandage.  Then I will go back to the wound care and they will redo the compression bandage so I will be set for another week.  That means I will be able to have a real shower for a day – spit baths are not the most convenient or satisfying and a shower.  The doc thinks it will be 3 – 5 weeks to heal the ulcer.

I met Eddie at home and then we went over to the office in Bellevue – Andy invited us to lunch with his Mom and Sue.  We went to a Chinese restaurant and Andy and his Mom chose the menu.  She doesn’t speak English, so Andy had to translate.  She is a lovely woman, it would be fun to be able to talk other in English since I have no Chinese.  They chose spring rolls to start – vegetarian, then pea vines, bamboo shoots – not like the ones that are flat rectangles – a fish dish, a chicken dish, brown and white rice.  I was concerned it would be hot, but it wasn’t – it was so delicious!  There was rice, fish and chicken left, so Andy had them box it up for us.  We had another meal of it on Friday – still delicious.

Friday morning I went to Doc Pierce for my pre-op and he put me on the scale – something I dread.  How lovely to find I had lost 9 pounds – all fluid I’m sure.  Whatever it was, I feel less stiff and my legs don’t look or feel quite so much like large sausages stuff in a small casing.  After that I had my haircut – good for 5 weeks.  I think I am done except for ultrasound and wound care Monday and Tuesday.  I need to concentrate on the taxes now – can’t put it off any longer.