What Do You Mean You Don't Want This??

Our daughter, our only child, is 32 years old and has her own tastes. Well, ok, that doesn't sound startling. But when I want her to have some things I think would be neat for her to have, and she says "Mom, that really isn't me.",  it does take a moment to sink in that something I like has no appeal to her at all! One could, if one were so inclined, actually have hurt feelings.

I had an antiques business, and have many items still left from that, plus items given to me by my parents which belonged to my grandparents and even great grandparents. They are precious - to me.  She hasn't grown up having those same feelings so she doesn't see them in the same context. And I had to learn a while back, that's OK. To be fair to me, though, she has changed her mind about some of the things, but only some. So I have been looking for places for the extra stuff in the barn: outlet stores for certain charities, people I know who might like them, or a university drama department.

Recently, she has begun sewing accessories, while taking a break from her painting and drawing. She is quite a good and creative seamstress, and has used a bunch of antique fabrics and tablecloths to make into shoulder bags, messenger bags and small pouches. She shares a love of fabric with me - I used to smock, French hand sew, and create one of a kind items of clothing for her. She looks forward to using the clothing herself should she be blessed with a daughter. But antique fabric! Oh my, it just made my heart beat a little faster - French linen sheets with heavy white embroidery, rough linen French feed sacks with a red or blue stripe  down the length of the bag, soft prints on cotton dress fabric, linen towels, barkcloth from the mid-century, tablecloths from the 1920's- 1950's, tickings of all kinds and toile. I would purchase them, wash and fold them and look lovingly at the stack. I sold many, but I always seemed to buy way more than I could sell (it helped to know other dealers who sold them by the lot for a great price!) and I use the linen sheets on our beds and old kitchen towels are put to use again in our kitchen. But still, just what am I going to do with the rest now?

I had to sell my antiques business when I became chronically ill. The fabric was boxed up and stored. First I had given Tabitha everything which was stained or had been torn, so she could cut around these parts and use them for sewing. Later I stood looking at the large plastic storage box which has been in the extra closet for years. How many years? And really, what good where they going to do me? They would do an awful lot for her, so I asked her if she wanted them - she pounced quite happily! She recently did her first show and did pretty well even though it really wasn't her demographic. And she's bursting with plans on how to make them even more unique!

(Photos taken by Daryl Ham)

Now, here's a secret - when she first showed me the small pouches using the different tickings as lining, my first thought was "AAHH - she cut up the ticking fabric!" Silly, isn't it? I realized then that it was good I had given them away, I had become attached to these "things".

Of course, some things haven't changed, there are still items I have which she doesn't want. And that's OK, it's her life. I respect that!

............... Well, I might still try to talk her into taking my grandmother's large beautiful dough bowl, made from a single piece of wood, or my great grandfather's long handmade porch bench .....................

And here's a good link to motivate you to move on, thanks to my friend Fran! Be sure to read it!

Live your life one day at a time!

Cross Country

On Tuesday, our daughter embarked on a cross country trip to Los Angeles. She has a friend who has MS and is moving out there and did not want to make the trip alone. On the previous Friday, she became very ill with a bad head cold and we weren't so sure she'd make the trip. But even though she felt only slightly better on Tuesday morning, she made the decision to go and now she's very glad she did.

They are driving on I-40, which ends at Barstow California. I'm familiar with I-40 on this end, as it goes near Asheville NC (about 2 hours above us) and on across NC to Wilmington at the coast, but I didn't know it went clear across the country. Every time they cross a state line, I get a text - "Tennessee!" "Arkansas!" "Oklahoma!" "Texas!" and the most recent - "Neeeew Mexico!". They are making very good time, and will take a side trip in Arizona to spend some time at the Grand Canyon. I am very happy that she will get to spend some time there, and a little envious - I've never been and always wanted to; John went to see it and even was able to hike a little bit when he had a business trip to Phoenix a few years back. Now I'm the only one in our family who hasn't seen it and I really don't know if I ever will. But she will at a young age, so she'll always have those memories.

Anyway, when she gets there, she will return home by plane. Thankfully, her friend will be driving around Los Angeles - I was a little nervous about her navigating those very, very busy highways! We will be keeping her dog Kit tomorrow till she returns; Kit's been staying with another one of her friends and I'm quite sure our big dog Abby will be thrilled to have her here. I hope it doesn't rain and the dogs can spend some really good  quality doggie time outside!

Interstate 40

We're looking forward to seeing her when she returns. She told me on the phone this morning "You know Mom, I really like our country!" How's that for a postive few of the US?

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Orchid in the Gulf and a Story: Storms

Once of the graces that has been given to me during this illness, is the ability to create art. It's somewhat sporadic as I have to spend so much time lying down. This time I wanted to create something special for another sufferer, who is also a friend. I found out her favorite colors - yellow and the colors of the Gulf of Mexico. She has to travel to get to the Gulf, so she doesn't get to spend time there now. She also loves flowers.

Orchid In The Gulf

(click to see details)

I knew I wanted to be able to get it to her as soon as possible, so I chose a small wrapped canvas- 8 x 8. It is mixed media, with collage, gel medium, acrylic paint and oil pastels. The flower comes from an old English botany book, and I made a copy to transfer on. However, it did not do very well and I ended up painting most of it. I also included  a postage stamp to bring out the bits of red, and a strip of muslin, dyed blue with paint, runs along the bottom. I love to extend my collage to the sides, so what you see collaged folds over the edges. I chose that particular flower because of the colors, they resembled the colors of the Gulf water. She notified me when she received it, and she loves it. That just makes my day!

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STORMS

61st in the Tuesday Story Series

Watching the path of Sandy for the past several days, and praying for all of the people in the congested area it was aimed for, could only bring back memories of another severe hurricane we went through in 1989 in Charleston - Hurricane Hugo. It made landfall in the Charleston area about midnight on 21 September and wreaked havoc through the early morning hours of 22 September. 

When I was a child, we went through Hurricane Gracie in 1959, and it was a Category 4 when it hit the South Carolina coast. We battened down the hatches and rode it out, since no one was warned to leave. I was eleven at the time, and a few memories that stand out to me was the wind and rain, the fact that my mother boiled several dozen eggs and when it was over, she stated "Well, I was expecting buckets and things to be flying through the air! Wasn't anything like that!" She was from Pennsylvania and this was her first hurricane to go through. The major damage from that storm was in Beaufort SC, although we were without electricity for a couple of days.

When Hugo started taking aim at Charleston, I was not concerned. By that time, I had been through numerous hurricanes and thought it would be just like the others. We made preparations and settled in to wait. When the electricity went off around 10 PM, that was the last we would see of it until 8 days later. Tabitha was about 6 years old, and doesn't remember anything about the storm, just the aftermath.  We had bedded her down on the floor of our closet, as it was the most protected place in the house.

Hugo made dead aim at Charleston, and I remember when the eye went over around midnight, we went outside and there was not a bit of wind. The stars were gorgeous and several neighbors called back and forth to make sure we were all okay. Then the wind started picking up and we all scooted back inside.

During that first half, we had heard all 15 trees fall, and each time they hit the ground, our stone fireplace shook. We heard several tornadoes go though between our row of houses and the houses behind us, and they do sound like trains! In another story, I will describe in more details about the destruction and how it affected us. For now, I will just say we were all right, but after that whenever a hurricane took direct aim at us, I packed the car and left for my parents. John stayed at work, in the emergency center area, because he couldn't leave. 

Hugo was a Category 4 when it slammed into our area, and the damage from it was the costliest in the US history till that time. Now, it's ranked as the 11th costliest storm to have made landfall in the US.

And they still built large beach houses right at the water's edge after that. Dumbest thing I ever saw.

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A Story: Comfort Kitty

It's been rather rough, these past few weeks. I had a cold in September (a gift from my husband) and although it only lasted a week, I am still dealing with the aftermath. I had a Skype appointment with my specialist in Charlotte a couple of weeks ago, and he told me that it would take about 6 weeks before I come out of the relapse even a mild cold can bring, on average. I've been able to paint a bit, and do a few other things, like feed the birds, but I have spent most of the time on the bed. I am starting to feel a tiny bit better. On a sad note, this is the 3 month anniversary of another sufferer of ME who died in her sleep of heart failure. One thing the doctor mentioned to me was that my heart rate may be unstable from the viral impact (I wear a heart monitor) and he was right - it didn't take much for my heart rate to spike and so I have had to take it real slow. But there are rays of sunshine, and the following story is one of them!

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Comfort Kitty

60th in the Tuesday Story Series

Because I spend so much time lying down, I had thought about adding to our menagerie of pets - right now we have 2 dogs, 1 cat and a fish named George. One dog is older and arthritic and does not come up the stairs, the other one is bouncy and not a good bed companion. Our cat would rather be outside, although we see to it that she comes in at night, because of the local coyotes. And a fish...is just a fish, even if he is a Fantail Beta.

One day after I began thinking about this, our daughter Tabitha was here and she told me that she had been thinking I needed a cuddly kitty to be on the bed with me. I told her that I had been thinking about the same thing, and I said, well we will see if one comes along, because going to a pet shelter, even in my wheel chair, during this relapse was out of the question.

A week or two later, she took me to my hair appointment and then on the way home, she mentioned that she had found a cat which met all the requirements - he was fixed, had been declawed, was three years old and very affectionate. I didn't mention that one of my daughter's favorite things to do is visit animal shelters and pet stores, just to play with the animals a bit. She asked me if I wanted to go see him, and at first I said no, because I was so fatigued, and then after a few minutes, I said well, ok. We were very near the place where the cat was.

Tabitha was excited and she said "Mom, I didn't tell you the best part - he looks just like Chester!" Chester was a orange/gold cat that we had had since he was a tiny kitten, and he lived till he was 13. He developed diabetes and I had to give him insulin shots for several months, but then he just started failing, and I had to be fair and put him out of his pain and suffering. It was several years ago, and it was really hard.

When we arrived, she took me over to the cages, and I had to sit on the floor, because I could not stand anymore. She had the lady open his cage and he came right out and rubbed up against us both. His story was that his previous owners had suddenly developed an allergy to him and his brother and had to release them to the shelter. I thought briefly about taking both of them, but the other one was a bit more rowdy, and it would not have been a good idea. So this cat, whose name was Tyndal, became a new member of our family.

It's been great, he is so sweet and cuddly and loves to be up on the bed with me. I did change his name, though, partly because I did not like the one he had, and partly because of my love for Chester - it's now Rochester. He stays upstairs with me, and loves to look out of the windows at the birds at the feeders and any other thing he can see. He was very patient having his picture taken, and is starting to be friends with the bigger dog which comes upstairs. He is my new Comfort Kitty!

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The Dog and The Shirt

When Tabitha comes over to help us twice a week, she often does the ironing. There isn't that much, it's usually some of John's dress shirts. But for some reason when she's ironing, our dog Abby will immediately come and join her. She loves to stand right under the shirts as they hang from the board, and often she doesn't move for several minutes. We haven't figured out why - often the shirts aren't warm yet because Tabitha has just started to iron it. My bed is not far from where the ironing board is set up, so this time I was able to get some shots to share with you.

Ahhhhh, feels so good!!

Click on any picture you want to see closer.

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Some Really Slow Days

I am really missing John and Tabitha right now and am so glad they are returning tomorrow. They will have been gone for 6 days. Having this illness affects everyone touched by it who serve as caretakers and I am glad they could have a vacation.

Ampligen is back in the news again. The one medication that has been proven to help ME sufferers has been so far turned down by the FDA, or they are dragging their collective feet as they have the past few years. Just think though, if you were one of the MANY doctors in the US who have denied the existence of ME, you would be terribly embarrassed to have medicine approved for something you have insisted did not exist. And the American Medical Assc. is a very strong and influential lobby. But someday this medicine will be allowed to become legal and I really don't care what that does to any of those doctor's reputations! There are too many sick people speaking out and advocating through the Internet now, and many doctors and organizations joining them and pushing through research. Canada and Belgium have used Ampligen for years with good results. In February 2013, Ampligen has a chance at getting approval with the FDA.

The following essay was written by another blogger and I am sharing it here. It applies to all of us, and we are learning to speak up. Most ME sufferers have fibro as well.


WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibro fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odours. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Copyright © Christina Settje

Thanking God that all research and organizations are under His control!

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