The weekend beginnings

Memorial Day Weekend..... It has begun with relaxation, sleeping in, setting steaks out to thaw. The house is clean, laundry caught up, flowers planted and a list made of more plants to purchase. I need a trip to the grocery store desperately, we're out of many basics.

A week and a half ago my doctors made 3 major medicine changes. This week, I was coming out of my skin, crying, shaking, not sleeping, in more pain than I'd had in quite some time. So, more medication changes were made, and I hurt much less, and my body is rapidly settling down.

Thank goodness for great doctors. I know that they are learning more about rare diseases than they ever thought that they would. They didn't give up when it took over 2 years to get a diagnosis. One of my specialists, however, is eating humble pie after informing me that it was all in my head. I knew better, and so did the other specialists who kept pushing and ruling out disease after disease until the right tests were performed, and they figured out what was happening. 

 It's not easy having me for a patient. At this time, they don't have a cure, treatments are being experimented with. Along with the AutoImmune  Retinopathy, toss in Cataracts and Arthritis, add some depression from dealing with it, and it tends to make me a pain to treat. Mainly one of the big problems is side effects from the drugs used to treat me. The side effects keep me from functioning well, and sometimes from functioning at all.

At times, I don't feel like a person. I'm a patient, a chart. 

We probably won't see my youngest this weekend. He's been in Moore, Oklahoma since the tornado on Monday. Being a member of the National Guard, he left work, got to sleep for a couple of hours and then they called him out. He's had a break, went to sleep, worked a shift at his regular job, and then reported back to duty. He lost his car keys, and his car has been parked at the National Guard Armory in Norman all week. Try to find car keys in a path of damage a mile and a half wide and 17 miles long. Luckily, his roommate is also serving and can take him back and forth.

The tornados have been a nightmare. We live about 10 miles away from the path of the Moore tornado, and about 7 miles from the path of the tornado that came through on Sunday. Being blind, I'd be in the way, so I've stayed home. Not knowing what else to do, I went online to the Red Cross and donated money. Then, I paid my son's phone bill to give him one less thing to deal with while he's on duty.

It's so wonderful to see the way that Oklahoma comes together in the face of disasters. Help comes within minutes, and everyone gets helped. There are very few homeless here, even with thousands of homes destroyed. That's due to family, neighbors and even total strangers opening their homes to those in need. We take care of our own here.

One of my sister-in-laws is an RN in east Tulsa, but in her off time she's been in Carney, one of the towns hard hit in Sunday's tornado. 

Enough for now

More.

I made it through Mother's Day. Had a few meltdowns, some major, some minor. Slept, cried, ate orange sherbet, cried and slept more. The only highlight of the day was the Survivor Finale, and then slept again as soon as the winner was announced.

I had yesterday booked solid. Eye tests and another appointment with Dr. Larsen in the morning. The afternoon held appointments with my Shrink(s) and with my GP. More blood work. The ear infection is back, and worse, so I'm on the third round of antibiotics and will see my Otologist if its not better by Monday.

More colors fading and the left eye is down to shapes, some colors, light and dark. It shimmers more than usual this evening. Annoying. There is a huge bruise almost a foot long on my left thigh from running into furniture the other day. A large bruise on my right arm is nearly gone after a few weeks.

So, after a lot of arguments and fighting, I've made a decision. I'm gonna Take the steroid sparing drugs. The thought of the risks associated with methotrexate scare the crap out of me. I spoke with my GP and eye specialist yesterday and am not convinced that the drug is as safe as they think It is. I'm more than willing to try new technology, there are new things being learned and discovered each and every day. This one is one that I don't feel good about taking. I feel that I'm being pushed into taking it. Lowering my immune system more than the steroids already have will make me give up so much. For what? That's what I'm asking. To see for a few more months? Maybe a year or two? Is it worth it?

Half a dozen hats are on the kitchen table waiting for new bands and decoration. If I've got to wear them, they might as well look great. My hobby cupboard has several dozen rolls of ribbon, all colors, widths and materials.

Baskets hold silk flowers, peacock feathers and other trims. When it rains later this week, I'll spend a few enjoyable hours working on them.

Enough, I'm worn out.

Passing

Sunday evening, just had a (another) nap. Fussing with the Windows 8 on my new laptop and finally downloaded kindle for PC since the kindle app that came with it had me gritting my teeth. Why should you have to redownload a book because you sign out of the app? Anyway, got the program installed and 348 books downloaded from the cloud, so now I can enjoy it.

My purple irises are blooming. Two years ago they didn't bloom, so I dug them all up and divided them, moving them to another part of the garden. The clematis vine is also blooming. The peonies are up, as well as the stargazer lillies that I planted last year. I'm ready to plant more flowers ASAP.

Dad passed away Friday afternoon. I was at the grocery store and received a text expressing sympathy on his passing. That is not the way to find out that your parent has died. I had been shopping for over four hours, and was in the checkout line, tears running down my face, and still had to wait for Darling Husband to come pick me up. Rough day, really truly rough.

I've spent the weekend talking with my sisters, getting things done, and thinking a lot. I won't travel to Indiana for the funeral, it's more than I'm capable of at this time. Having even less vision than I had when mom died three months ago, made my decision.

Dad gave me up for adoption 50 years ago, and two of my sisters 45 years ago. He kept the youngest two, and they were with him at the end, along with my stepmom. I wonder if he ever regretted it. And I wonder what life would have been like if I had grown up with him.

I had always been part of his life, mine was an open adoption, unheard of back in the sixties. My stepmom and adopted dad were engaged to each other back in the early fifties. I grew up with all of the families around me. Both dads at my wedding and graduation.

When my daughter was born both dads came to see me. They had grown beards and didn't recognize each other. One walked up and held out his hand, saying, "hi, I'm Suzy's dad". The other put out his hand and said "so am I". I nearly wet my pants laughing.

I spent time with my birth family, a lot of time. Phone calls, visits, cards, holidays, just like a normal family. My two sisters who were given up never have. They had no relationship with him, never met the two youngest sisters, even though they grew up about fifteen miles away. It was a different dynamic with their family. I met the girls who were given up when I was a young adult, and have good relationships with them.

I feel that dad really missed out. Five beautiful, amazing women, each one accomplished, loving, intelligent. Four of us have married, have children, and wonderful lives. We're successful women, well educated, each in different ways. In many ways we are similar, but there is no confusing any of us with the others. Two are grandmothers.

 Five grandchildren live within twenty miles of dad, and he chose to not have anything to do with them. What pain his actions have caused others. I'm fine, but I hurt for my sisters and stepmom. 

Consequences are painful, not necessarily for the one who acted, but for other people who are part of their lives. Dad really missed out on life. What he had was good, but could have been so much better.

Enough for tonight

Good and bad

Today was my first Orientation and Mobility (white cane training) visit. The gentleman who will show me the ropes was very kind and easy to talk to. I'm really looking forward to the lessons. They will rock my world, just by virtue of the degrees of confidence and independence that they will give me.

Got a message earlier that my Dad passed away today