Seeing Stars

My Husband made me see stars last weekend. He does it a lot, part of the magic which makes up our relationship, and one of the many reasons that I absolutely love and adore him.

Actually, he made it possible for me to see stars. He gifted me with a wonderful pair of light gathering binoculars and we went to The Black Mesa. It has, I've been told, the darkest night sky in America. 

No, I couldn't see many, none were clear. They were there, right in front of me, and I saw some of them!

It has been almost 3 years since the last time I saw any. It's one of the things about this disease which bothers me the most. Stargazing is something which I truly adore and have done all of my life. Relaxing on a blanket with a cool beverage on a clear night was something that made a busy life worthwhile.

Seeing stars was a gift. I had thought that I would never see them again. This was one of the very best gifts I have ever received. 

Thank you Darling, I love you.

Reunion and Reorganizing

I have a class reunion this summer. Folks got a wild hair and decided to throw a 34th year one. Any excuse for a party, pretty much like it was back then. I'd love to go, I've stayed in touch with a lot of friends from back home, and Facebook has made it easier to keep up with others. We are scattered all over the world and yet still part of each other's lives. They're a great bunch of folks. I liked them then, and still do. Some I've known since babyhood, quite a few I cannot remember not knowing. We all are part of what makes us the people that we are now. I am me, in part, because of these people. They are in my very earliest memories, that's a long time to have friends in your life.

Working on the wardrobe organizing. Cried for a few minutes when I realized that muted reds, oranges and browns are pretty much merged in my sight. Thankfully, I have an app which tells me what color things are when I point the camera at it. I have one section of complete outfits, and I'll add info as to which purses, hats and shoes go with each combo. Another section features separates which all coordinate. I'll label each piece as to the accessories which will work best with it. Once I finish labeling them, I will wear every combination. A photo of every single combo can have my special tags and labels attached, making it easy to shop in the future, showing the styles and colors which work with my body and coloring. 

It seems there are a lot of things to do while there still is a little sight. Projects, and as I work on each, it leads me to more. None hard, each necessary, a few vital to my piece of mind.

Labeling and copying photos on the computer, burning copies for my sons. Otherwise, they're picking up a photo, tossing it because no one has a clue as to whom they're seeing.  If they really don't care about them, that's one thing. My sons like their family, having those pictures for their children and grandchildren will be a thing that they'd want. Part of their histories, 10 generations of relatives. That's a neat legacy to pass on to them.

Another thing is going through the computer, organizing and backing things up, deleting ancient crap on it. It was new in '06, has a minuscule (30 gig) hard drive. Only one game on it. I deleted and gave away the other games once I could no longer see to play them. Using multiple magnifying glasses to read the screen will make the going slow.

What I need to do is transfer everything to the laptop and retire the old computer. The laptop can be hooked up to the big TV and viewed that way. Much easier than wearing magnifying glasses AND looking through a large lighted magnifier to see the screen on the old one. Talk about a quick headache maker. I'm good for about 5 minutes at most before my head screams from trying to make out any details. Then, I can't get near it for anywhere from hours to days. 

Enough for now. 

Catching up

I'm playing catchup on some posts. Between storms and medication, I've got some stuck in the notepad.

Enough with the tornados, threat of tornados and talk of tornados. EF5's, and world record tornados and wind speeds is mind boggling. Way  too much for everyone in the past couple of weeks. Flooding, massive amounts of rain, and straight line winds just add insult to injury. We Okies are resilient, but we sure could use a break of some good weather for awhile.

We stayed safe, went to a shelter last Friday evening during one storm. During the latest round we kept power but lost HD and Internet for a few days. Thankfully, I have a wifi hotspot to get us through. 

With all of the storms, I've stayed at home except for doctor's appointments lately. So, there are plenty of things to keep me busy. The latest round of side effects don't leave me much awake time right now. Using my time very wisely and being extremely careful to pace myself is something I'm living with. You'd think that I'd be used to side effects by now, but no, they just keep coming...... Sleepy, Blurry, Fuzzy, Pukey, Dopie, Dizzy, Wobbly, Weepy, Grumpy, Bitchy (nastier than Grumpy, much nastier), Achy and Itchy. Too many, way too many.

Looking forward to nice weather. Some sunny skies, lovely breezes and calm. You know, the best of spring and early summer. Days to enjoy grilling, sitting on the patio and chatting during a colorful sunset. Being able to dig in the dirt, instead of wading through mud. I do love this time of year, everything is so fresh and sweet.

Let the side effects begin (again)

A week on methotrexate, the second dose will be taken tomorrow.  4 Days of sleeping up to 18 hours, being sore from sleeping in one position too long. No appetite, and an upset stomach. I'm forcing myself to eat. I've lost 4 pounds this week. Hard to get up to 1000 calories. Living on fruit, low sodium peanut butter, either a BLT or part of a club sandwich daily. Retaining fluids, so I'm continuously sipping water and coffee to try to stay on top of that. Tonight I'm sipping water with a squirt of lemon juice, it helps some. Yesterday and today I felt pretty good but Really fuzzy/foggy/somewhat out of it. Remember the 70's? Nah, me either......

So, I actually see the lack of appetite as a wonderful thing. I've been on a weight loss plateau, battling various medications which cause weight gain for over 2 years, including one that packed on 30 pounds in just a few months. Tracking every bite which goes into my mouth, 900-1100 calories 5 days a week. The other 2 days I'd let myself have up to 2000 calories. Making myself exercise no matter how I felt to stay healthy and try not to pack on more pounds. Very discouraging, knowing without the medications I'd be sicker but I'd also weigh what I was supposed to.

Had another O&M (white cane) lesson today. Today I learned to walk on and cross streets, small neighborhood ones. It felt really nice to walk without being bent over to try and make out things like potholes and curbs. There are few sidewalks in the city, the area is just hilly enough to not be able to walk in yards. So, as sight declines more I'll be limited to taking walks in our little dozen house neighborhood. 50th Street is just too dangerous to cross, especially with it being a major thoroughfare and having a Parkway next to it.  So, it's catching a ride with friends and relatives, taking a cab, or riding the city bus that I have to book 2 weeks in advance. Why can't cities require sidewalks when neighborhoods are built? Seriously, OKC is built for automobile traffic. If you want to go walking, you have to drive to places to do it.

When I ride the Etrike I pretty much take my life into my hands. Either crossing 50th street or riding along it almost 2 blocks in order to get to quiet neighborhood streets. It makes me so nervous to just do that little bit. At this time I can still make out shapes, movement and some colors. I want to get out, to go places on my own. With the quiet streets I feel safe, and can get my exercise.

I'm not allowing this disease to make me into a shutin. I have too many plans for my life, and they do not include reducing my world to my house and yard.

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