Gift of RA

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.