Gift of RA

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.

Here it is a week later – I thought I had more to write, but I must have because I didn’t send it out.  So this is last week’s post, I will work this week’s today.

I know it has been 2 weeks since I last wrote a post – a week ago Friday I learned something that upset me and I have been coming to terms with it while was simmering on the back burner.  I have a small sore on my leg that doesn’t heal – not skin cancer but I wasn’t sure what.  It was all red around it and I knew I needed to have it check.  My rheumatologist didn’t know and back when it happened, she debated whether to do Orencia or not.  Fortunately she did okay  my infusion.  Last Friday I saw my dermatologist and she knew right away what it was – an ulcer.  Not only that, according to her it would take weeks to heal.  I have scar tissue below the skin from constant edema – knew my legs were swollen but I had no idea all that was happening under the skin.  She wanted me to do a vascular ultrasound to see if the varicose veins are affected and she sent to wound care center as well.

What upset me was suddenly here are long term side effects of RA – something I never thought about.  Now it is hitting me in the face and I don’t quite know how to handle it.   Then it escalates to “What else is the down the road for me?”  If I had written a post last Sunday, I would have  whinged and moaned, feeling a victim.  I knew I needed time to let it sink in and get used to the idea – I am not so emotional about it this week.  I had lunch with Charlotte on Wednesday and we had a great time.  I wanted to talk to her about it because she has had to deal with medical stuff longer than I have and I wanted to know how she deals with it.  Essentially it is a matter of “This what it is” and not getting all uptight, depressed and having a victim mentality.  I wasn’t really able to put into words what I was feeling to explain to her, yet I know she understands.  She is often the one I talk to about medical stuff and for the past 14 years about husbands and being laid off – otherwise known as being made redundant.

After the initial upset and feeling a victim, I had to pull up my socks and think interns of a different perspective about it.  What are the gifts and what positive and empowering thoughts can I shift to instead of victim?  I have had that victim mentality too long and I choose and prefer positive thoughts.  I don’t quite have the answers yet, but at least I am in a more positive frame of mind.

Friday morning I went to the wound care center and found out they are all quite friendly there and also, the nurse said the ulcer isn’t very deep.  She asked all kinds of questions as she cleaned out the dead skin and then there was a small square of some honey antibiotic, then a pad to keep it in place, then tape, then wrapped in cotton – almost looked like fabric.  The she wound some brown fabricy stuff that sticks to itself – they use blue  for my infusion – and finally a pressure bandage all around.  For this little sore, she wrapped me from toe to knee.  Finally she had a black cotton sock up to my knee to keep the pressure bandage from getting all over my clothes.  I can’t get it wet, so spit baths are in order.  Today I had to wash my hair, so I had a white garbage tied around my leg and I stood behind the shower chair to keep me as dry as possible.  It did work, so now I just have to figure out how to get the rest of me in the shower to be clean and not get my leg wet.  It is good for a week, so next Thursday morning I will go back and have it changed and she can check to see how it is doing.