Post by kathsherman on Jul 25, 2009 10:13:45 GMT -5
Well Jeff...I must do an excellent job hiding my daily struggles with sclero from most of my family/friends/co-workers. Really, only my wonderful husband and two helpful daughters know how to adapt to this disease. It's my own fault. I still get so annoyed at people I work/volunteer with that don't seem to "get it". I have to stop and realize that other than my "curly fingers", I look "normal". I guess, I get tired of reminding everyone that I have SD. I will take the opportunity to educate anyone/everyone who asks and truly wants to learn. I get the chance to introduce the topic of SD at work quite often (main desk at our local library), if I struggle to handle heavy books and others notice.
A funny story....I have had SD for almost 17 yrs. and my Mom finally "gets it". Year after year, she has begged me to take my girls (12+16 yrs.) and travel with her. She has recently retired and being a widow, would like us to accompany her on trips. My husband works alot and is unable to join us. I tried telling her that traveling isn't so easy for me. Besides, just maintaining my chaotic daily schedule is enough! Anyway....I agreed to a "girls trip" to Alexandria Bay Resort, 3 hours north of here, on the Canadian border. How bad can that be? A short quick trip. As you can guess....it was bad! First, we booked a large single room for "Grandma, Mom(me) and two young girls. Mistake #1!! Too many in one room. My Mom has the T.V. on constantly (she calls it "white noise"...huh?). The girls and I, never watch T.V. during the day and we're on vacation....right? We read while relaxing, preferably by the water (St.Lawrence) or the pool. Then, every time my Mom would open our balcony door for some "cool fresh air", I would eventually close it for some much needed warmth (even in July). My Mom thought we could dine on a "beautiful boat" while touring the Thousand Islands. Except, eating on the deck of the ship in the morning on a cool day is not good for my hands. So, I excused myself and sat on a lower level and starved! Let's not forget the "shower debacle". After several attempts to enjoy our "girls vacay", I couldn't wait to get into a nice WARM shower, get my Jammie's on and relax for the evening with a good book. Mom took the girls for a walk in town to shop. I began to gather my toiletries for the shower and forgot my padded bath mat (stand on because my feet get cold/sore standing bare foot in a cold tub). That's O.K, I thought....I know...I'll put several plush soft bath towels down and stand on those. As soon as I got in the shower and turned the handle, it broke and freezing water sprayed directly over my head/body. The well placed towels used to pad my feet were floating around the tub and I was trapped along the edges of the cold tiles, holding on for dear life. If this isn't bad enough? Just as I was climbing out of this freezing cold mess, I started to cry and guess who opens the door? Mom and my girls, arriving home from shopping. I stood there like a shivering "naked" wet rat!!!!! I yelled, "now do you understand the difficulties I have to endure?". They all looked at me like I was crazy. My Mom felt so bad and said she never realized my daily struggles because I never complain or discussed it with her. Come on...really? I have tried over the years. So, now when my Mom takes a trip (just went to Alaska) she doesn't ask me to go. I will go with her if she goes to Hawaii!!
Kathleen xoxo
A funny story....I have had SD for almost 17 yrs. and my Mom finally "gets it". Year after year, she has begged me to take my girls (12+16 yrs.) and travel with her. She has recently retired and being a widow, would like us to accompany her on trips. My husband works alot and is unable to join us. I tried telling her that traveling isn't so easy for me. Besides, just maintaining my chaotic daily schedule is enough! Anyway....I agreed to a "girls trip" to Alexandria Bay Resort, 3 hours north of here, on the Canadian border. How bad can that be? A short quick trip. As you can guess....it was bad! First, we booked a large single room for "Grandma, Mom(me) and two young girls. Mistake #1!! Too many in one room. My Mom has the T.V. on constantly (she calls it "white noise"...huh?). The girls and I, never watch T.V. during the day and we're on vacation....right? We read while relaxing, preferably by the water (St.Lawrence) or the pool. Then, every time my Mom would open our balcony door for some "cool fresh air", I would eventually close it for some much needed warmth (even in July). My Mom thought we could dine on a "beautiful boat" while touring the Thousand Islands. Except, eating on the deck of the ship in the morning on a cool day is not good for my hands. So, I excused myself and sat on a lower level and starved! Let's not forget the "shower debacle". After several attempts to enjoy our "girls vacay", I couldn't wait to get into a nice WARM shower, get my Jammie's on and relax for the evening with a good book. Mom took the girls for a walk in town to shop. I began to gather my toiletries for the shower and forgot my padded bath mat (stand on because my feet get cold/sore standing bare foot in a cold tub). That's O.K, I thought....I know...I'll put several plush soft bath towels down and stand on those. As soon as I got in the shower and turned the handle, it broke and freezing water sprayed directly over my head/body. The well placed towels used to pad my feet were floating around the tub and I was trapped along the edges of the cold tiles, holding on for dear life. If this isn't bad enough? Just as I was climbing out of this freezing cold mess, I started to cry and guess who opens the door? Mom and my girls, arriving home from shopping. I stood there like a shivering "naked" wet rat!!!!! I yelled, "now do you understand the difficulties I have to endure?". They all looked at me like I was crazy. My Mom felt so bad and said she never realized my daily struggles because I never complain or discussed it with her. Come on...really? I have tried over the years. So, now when my Mom takes a trip (just went to Alaska) she doesn't ask me to go. I will go with her if she goes to Hawaii!!
Kathleen xoxo