I am really struggling with MS symptoms. I am getting worse. My home is no longer easy in which to maneuver. Lots of prayer and decisions must be made.
In the meantime, since I don't get to do anything else with my body, my imagination is working overtime. I have been writing little stories, and laughing my head off. The Creative Writing Degree I got online from Westlyan 3 or 4 years ago is finally being used! Who knew? I took it because I wanted to, yet did not know how or when I would use it.
This is an amazing season of my life. I smile and laugh all the time, which people do not understand and they never have. MS doesn't look like anything, and people have often said to me as I put my walker into the car: "YOU DON'T NEED THAT!".
After I got sick 6 years ago and had to stop work immediately, a client came to see me and said with extreme irritation: "You look okay to me!" She left angry, never to contact me again. I had been her hairstylist for over twenty years and knew me when the MS started. But that is the MS life. I always look okay and I have a smile on my face. When I became ill, I had several decisions to make. What kind of a disabled person would I be? How would I behave in a wheelchair?
I came up with 2 things that I promised myself I would do every day. Every day I would choose joy. Every day I would get dressed and put my makeup on, even when I was so sick I couldn't see, or hear or walk around. Sometimes it took hours, but I have always been determined to be joyful, clean, and beautiful. Truly no one knows what to do with a joyful person in a wheelchair. I spend a lot of time caring for other's reaction, as those close to me are devastated when they find out something is wrong. I mentored a young woman years ago, when I was not using assistive devices for a while. I guess someone told her. She was furious! "Why didn't you tell me???" As I have mentioned, I tend not to be transparent, as I see no need to talk about my illness. God takes care of me so well!
Tape Face
I had the most wonderful and difficult day of my life yesterday. I am physically getting much worse, but I am having a wonderful time! Most people who really know me already think I am a little strange, so this won’t be unusual to them. Note: I am the quiet one in our home.
I had a FaceTime with Deb in the morning. I think it was around 7 a.m. Al had gone on his brief trek to feed Gloria’s kitties, one of his daily jobs. The FaceTime with her was completely delightful! Deb never realizes how completely hysterically funny she is. She always gives me quotable quotes to which I laugh so hard, I almost fall to the floor. Yesterday’s “quotable quote” was the best yet. I torture her with it over and over again so that she can laugh and fall to the floor too! What are friends for anyway???
Before I tell you about that Deb Quote, I will tell you about the last one that was so funny that I bring it up constantly to make her laugh.
My cousin did not take care of herself as her body was being ravaged by the effects of diabetes, and she died in 2001, saying. “I’m going to the hospital, they’ll fix me up and I’ll be back.” This happened to many times to list. She was 67, and died on the way to the hospital.
I was the closest relative relationally and physically and I took care of her estate because she had no heirs and no will. That’s a whole other story!
One time many years ago, I was concerned about my cousin because her diabetes was slowly taking functions away. I was sad and called Deb and told her that my cousin was blind. Her reply was a flat ‘bummer’. Let that sink in…. She seemed unstartled, there was no: “what???????”, just “bummer”. The sad I was feeling turned into hysterical laughter! I have been torturing her with that ever since. She would say something about which she was sad, and I would reply a flat “bummer”. It always chased the dark clouds away!
Yesterday Deb was telling me about an encounter with a neighbor. Her description, expressed in a sweet quiet voice: “He was SUCH a nice man, he killed two people, and he was so nice”. Imagine my response! Now that will be added to the torture that I already dish her.
Al came home. We help Gloria every day while she is in Kensington place and he came home absolutely exhausted yesterday. My FaceTime continued and the laughter continued. I was completely exhausted by the FaceTime and lay down. I slept 4 hours.
When I woke up a news flash came on my phone that I was able to read: earthquake 6.4 in Southern California. I have the dearest friend who lives in the area. I called her immediately to see if she was affected by the quake. She wasn’t but her house really rocked. I haven’t spoken to her for months, so when I heard she was okay, we started having conversations with so much laughter. Meanwhile Al was doing all of my jobs, laundry, housecleaning, etc.
When I got off the phone, with exuberance, I continued to laugh and talk. Al looked overly irritated.” Oh, am I talking too much? YES!!!!”
To keep his sanity, Al went out to the garage for a few minutes. When he came in. I was sitting with my eyes wide open, with eyeliner. Across my mouth I put a sticky note that said: “Tape Face” He burst into laughter and we laughed the rest of the day. Please google Tape Face and you will have the visual.
I am getting a lot of suggestions for my walkers and wheelchair. They are wonderful!!! I am trying to put them in a document, soon to be revealed.
In the meantime, since I don't get to do anything else with my body, my imagination is working overtime. I have been writing little stories, and laughing my head off. The Creative Writing Degree I got online from Westlyan 3 or 4 years ago is finally being used! Who knew? I took it because I wanted to, yet did not know how or when I would use it.
This is an amazing season of my life. I smile and laugh all the time, which people do not understand and they never have. MS doesn't look like anything, and people have often said to me as I put my walker into the car: "YOU DON'T NEED THAT!".
After I got sick 6 years ago and had to stop work immediately, a client came to see me and said with extreme irritation: "You look okay to me!" She left angry, never to contact me again. I had been her hairstylist for over twenty years and knew me when the MS started. But that is the MS life. I always look okay and I have a smile on my face. When I became ill, I had several decisions to make. What kind of a disabled person would I be? How would I behave in a wheelchair?
I came up with 2 things that I promised myself I would do every day. Every day I would choose joy. Every day I would get dressed and put my makeup on, even when I was so sick I couldn't see, or hear or walk around. Sometimes it took hours, but I have always been determined to be joyful, clean, and beautiful. Truly no one knows what to do with a joyful person in a wheelchair. I spend a lot of time caring for other's reaction, as those close to me are devastated when they find out something is wrong. I mentored a young woman years ago, when I was not using assistive devices for a while. I guess someone told her. She was furious! "Why didn't you tell me???" As I have mentioned, I tend not to be transparent, as I see no need to talk about my illness. God takes care of me so well!
Tape Face
I had the most wonderful and difficult day of my life yesterday. I am physically getting much worse, but I am having a wonderful time! Most people who really know me already think I am a little strange, so this won’t be unusual to them. Note: I am the quiet one in our home.
I had a FaceTime with Deb in the morning. I think it was around 7 a.m. Al had gone on his brief trek to feed Gloria’s kitties, one of his daily jobs. The FaceTime with her was completely delightful! Deb never realizes how completely hysterically funny she is. She always gives me quotable quotes to which I laugh so hard, I almost fall to the floor. Yesterday’s “quotable quote” was the best yet. I torture her with it over and over again so that she can laugh and fall to the floor too! What are friends for anyway???
Before I tell you about that Deb Quote, I will tell you about the last one that was so funny that I bring it up constantly to make her laugh.
My cousin did not take care of herself as her body was being ravaged by the effects of diabetes, and she died in 2001, saying. “I’m going to the hospital, they’ll fix me up and I’ll be back.” This happened to many times to list. She was 67, and died on the way to the hospital.
I was the closest relative relationally and physically and I took care of her estate because she had no heirs and no will. That’s a whole other story!
One time many years ago, I was concerned about my cousin because her diabetes was slowly taking functions away. I was sad and called Deb and told her that my cousin was blind. Her reply was a flat ‘bummer’. Let that sink in…. She seemed unstartled, there was no: “what???????”, just “bummer”. The sad I was feeling turned into hysterical laughter! I have been torturing her with that ever since. She would say something about which she was sad, and I would reply a flat “bummer”. It always chased the dark clouds away!
Yesterday Deb was telling me about an encounter with a neighbor. Her description, expressed in a sweet quiet voice: “He was SUCH a nice man, he killed two people, and he was so nice”. Imagine my response! Now that will be added to the torture that I already dish her.
Al came home. We help Gloria every day while she is in Kensington place and he came home absolutely exhausted yesterday. My FaceTime continued and the laughter continued. I was completely exhausted by the FaceTime and lay down. I slept 4 hours.
When I woke up a news flash came on my phone that I was able to read: earthquake 6.4 in Southern California. I have the dearest friend who lives in the area. I called her immediately to see if she was affected by the quake. She wasn’t but her house really rocked. I haven’t spoken to her for months, so when I heard she was okay, we started having conversations with so much laughter. Meanwhile Al was doing all of my jobs, laundry, housecleaning, etc.
When I got off the phone, with exuberance, I continued to laugh and talk. Al looked overly irritated.” Oh, am I talking too much? YES!!!!”
To keep his sanity, Al went out to the garage for a few minutes. When he came in. I was sitting with my eyes wide open, with eyeliner. Across my mouth I put a sticky note that said: “Tape Face” He burst into laughter and we laughed the rest of the day. Please google Tape Face and you will have the visual.
I am getting a lot of suggestions for my walkers and wheelchair. They are wonderful!!! I am trying to put them in a document, soon to be revealed.
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