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Living With Wolfram Syndrome – Lauren Gibilisco

Lauren to the Rescue

images-1I have been feeling pretty well. But the last few weeks my toes have hurt on one foot. I think it is from overdoing it on the exercise. I exercise whenever I’m bored so I exercise a lot. My mom told me to take it easy on the exercise until my foot stopped hurting. So now I have been a little more bored, if that is possible, because I’m not exercising as much. Oh well, that just means I get to talk more which drives my mom nuts. Ha-ha.

A couple of weeks ago we got a lot of snow here although not as much as the Boston area. We got 18 inches of snow with winds blowing 40 miles an hour and wind chills 20 below zero. That morning my dad was putting the snow blower into the back of the truck to take to the store and he slipped on ice and broke his arm. He just had surgery on Friday. They couldn’t do it any sooner because of the swelling. He broke his right arm so he can’t do much. I feel very bad for him and keep praying that it will heal soon.

I’ve had to help my dad button his shirt, put on his socks, open the pop up and open up containers with his pills in them. The only thing he is able to do with his arm is to write if possible. Other than that he cannot use it at all. It was a very bad break and they had to order a special plate and screws to fix it up. So the doctors were very clear to him that he could do NOTHING with it.

So thanks to him I’ve got a new job to do. I don’t mind it at all. It gives me something to do. It also gives me someone else to talk to. I feel very useful and I haven’t felt like this in a long time. I like feeling this way. It makes me feel good to help someone else.

There is one more thing my dad needs help doing, and that’s driving. Now I tell everyone that I am his new driver. Ha-ha. (Not too bad for someone living with wolfram syndrome.)

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Living With Wolfram Syndrome – Lauren Gibilisco

Wolfram syndrome patient Lauren GibiliscoSometimes it’s doing the simple things in life that someone with Wolfram syndrome has trouble doing.

One morning last week my mom was going to work and she was going to drop me off at work. We were heading out the door when she remembered she didn’t put back on her wedding rings. She went into the office where she took them off last night. Well, they weren’t there. She then went into the kitchen to see if she had taken them off there. They weren’t there. Now she was starting to get frantic. She checked in the living room, the bathroom and the bedroom. They were not to be found. All this time I hear her rushing back and forth. So what could I do? Absolutely nothing. If I tried to help her look I would probably knock something off a counter and it would break and I would just cause her more problems. I felt so bad that I couldn’t help her. So I sat there and did the only thing that I could do. I started praying. I prayed to St. Anthony who is the patron saint of lost things. I asked for his help in helping my mom find her rings. She kept saying I know I took them off in the office. She sat in the office chair just feeling devastated. She looked around closely to everything in the room and finally said “I know where they are.” She then picked up a bottle of jewelry cleaner. Last night she put them in the solution to clean the rings. My mom was so happy now. I just whispered my thanks to St. Anthony.

I get really bored at home. My mom told me my sister was going out of town for several days and we get to keep Emmy, her dog. We were going to pick her up on Friday. That week I worked on Wednesday and Thursday. I was so excited to get her. Riding home my mom asked me if I wanted to hold her. I really wanted to but I was just so tired I had to sleep on the ride home. Then when we got home that night and I was still so tired that I had to go to bed right after supper. I still had Saturday and Sunday to enjoy her. Unfortunately they were no better. I was still tired and although I played with her some I couldn’t really enjoy her because of my fatigue. But there was one thing I could do that really helped out. Emmy is a very good dog and obeys commands except for when you say “come.” She thinks it’s a game and goes running around. Both my mom and dad have so much trouble catching her to put her in the kennel. I wish I could see what they look like but I can imagine from hearing them running around so out of breath. She will never let them catch her. So my mom yelled at me to sit down and call for Emmy. So I sat down and said “Emmy come here.” Emmy walked over to me and sat in my lap and I was able to pick her up so we could get her in the kennel. Emmy has always been that way for me. It’s like she knows I can’t see her so she makes it easy for me to get her. They always say dogs can sense things. So sometimes I guess it’s a blessing to be blind.

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Living With Wolfram Syndrome – Lauren Gibilisco

Wolfram syndrome patient Lauren GibiliscoWith Wolfram syndrome, I continue to have problems with my vision.

Through the holidays at work there were Christmas trees up in several of the rooms. When I was passing through one room, I saw a tall shadow and I said hello but no one said anything. So I took my cane and poked at it and realized it was not a person but a tree. How embarrassing!

I told you in my last blog that I was going to ramp up my exercising to lose those holiday pounds. Recently, I was watching TV and there was a commercial about losing weight fast. So of course, it caught my attention. Who wouldn’t want a quick way to lose weight? I listened to it hoping they were going to talk about some new exercise to do, but it was for a “drink product.” As I was listening to it, I realized I was eating a bowl of ice cream. Was this a sign that I was not supposed to eat it? Nope, it tasted too good so I ate it anyway. But afterwards I did a lot of exercising so I wouldn’t feel so guilty.

I have mentioned that living with Wolfram syndrome, I have a lot of trouble with heat intolerance. For the last month we have had temperatures in the low teens with wind chills below zero. I love this time of year. I can just open the upstairs outside door and do my exercises with the cold air keeping me from getting so hot. My family doesn’t appreciate it though. But this week the temperature got up to 50 degrees. I asked my parents if they would turn on the air conditioner. Good thing I couldn’t see the dirty look they gave me. Haha.

I thought I would model one of my new shirts for you all to see. Have a great week everyone.

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Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren Gibilsco at ChristmasMerry Christmas Everyone!

I dressed up in a Santa hat and wore a bell when I went to work. The bell jingling as I walked down the hall warned my fellow employees that I was coming. My bosses liked this because then they knew where to find me.

But this gave me an idea. I was going to have to be home by myself with my sisters dog Emmy for a few hours. I worried that I wouldn’t be able to know where she was. She is very nosy and likes to get into everything. She even unwrapped some of my sisters presents at home. We of course needed to get Emmy some toys for her first Christmas. While we were looking around I came up with the idea to get bells to put on Emmy so I would know where she was. My mom found a Santa collar with 3 bells on it that we could put on her. This worked great as I was able to hear where she was. Sometimes you have to be creative and come up with solutions to problems.

I had a very nice Christmas. On Christmas Eve it was just our family and that was nice because it was quiet so we could talk and hear each other. We opened our presents that night. I received 8 new tops, some for dress and some for casual. My mom and sister picked them out. It is the only way I can stay current with fashion. I rely on them to tell me if is really looks good on me or not. They did get me two long sleeve shirts but the material was very light and thin so even with my heat intolerance I shouldn’t have problems wearing them.

The next day on Christmas we went to Church and then up to Omaha to see my mom’s side of the family. My mom had to take me up to the table and tell me what desserts there were for me to try. She has to tell me because I can’t smell them and barely taste them. My tests from St. Louis reported I have no sense of smell anymore. Since it is Christmas time I am going to indulge myself with a few sweets. In order to do this I will need to ramp up my exercise routine and work off those extra sugars and calories. I am not familiar with my aunt’s house. I went to use the restroom and thought I was walking straight but instead ran into the door. Luckily I didn’t hit the door too hard. The only sad part of the party was that my grandparents were not able to come. They were both very sick from Influenza and they couldn’t come and we couldn’t visit them. But I was able to talk with them on the phone.

Of course I was keeping the true meaning of Christmas in my heart.

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Living With Wolfram Syndrome – Lauren Gibilisco

Wolfram syndrome patient, Lauren GibiliscoAs I mentioned previously, I had a test done for my oxygen levels over night. I am happy to say they are normal.

I was dreading the thought of having to use a cpap during the night. I did do as the doctor instructed and started taking Vitamin B. Although I still do sleep a lot at night, I am only taking one nap a day instead of 3. That is a big improvement and I think it means I am also sleeping better at night.

When I first went to go to the hospital to get the oxygen machine, the nurse was showing me how it worked. It didn’t take long and I told her I had a rare disease, Wolfram syndrome, that only one person in 500,000 develop. Then she said enthusiastically “oh, can I shake your hand? I have never met a rare person.” I told her she would probably never meet another one like me in which my mother replied “thank God.”

I had a wonderful Thanksgiving Day. Most of my family was able to come down to our house. It’s hard to get everyone together. My cousin had just returned from his second tour of Afghanistan. We all were very thankful to have him with us.

It was hard to hear though. Too many people in one room. Too much noise for someone with hearing aids. I really couldn’t hear the conversations so I just sat there just enjoying their presence. I also had real trouble tasting what I was eating. Sometimes I really did not know what I was chewing. I can’t see it and have trouble tasting it or smelling it so I rely on my memory of what that food tasted like. That is one thing I really missed. Getting up in the morning on Thanksgiving Day and smelling the turkey.

But as I said, the most important thing was being very thankful and having most of my family with me that day. My grandparents are getting old so I treasure every minute with him. I really enjoyed spending time with my cousins and aunts and of course, with my family. My sister brought along her puppy Emmy and I was very thankful for that. I really, really enjoy playing with her.

I hope you all had a very nice Thanksgiving. We all have so much to be thankful for.

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Living With Wolfram Syndrome – Lauren Gibilisco

Happy Birthday to Me!

10647102_10205319102845944_4536639020705171881_nIt’s been an exciting week for me. On Sunday my mom and I went to the grocery store. After we were checked out my mom remembered she needed one more thing. She gave the keys to the sacker and told her to take the groceries out and get Lauren into the car. She also told her where her car was and what color. The sacker led me around to the front seat of the car and I got in. When I was in the car I thought the door seemed a little different. I felt the door handle and thought it felt different. So I got out of the car and when I did two people who were friends of mine were walking past and stopped to say hi. I said to her what color is this car? She replied it was black. I asked her if it was a SUV and she said it was a station wagon. The sacker was just standing there waiting to put the groceries in the car. My friend said I think that one is your car. She checked the key with the lock and it was. And they call me the BLIND one.

I also was able to skype with one of our new members from Italy. It was Frederica. My mom and I talked to her and her parents but they didn’t understand English. I was luckily able to hear her well. I have trouble hearing people with accents. But she spoke good English and we were able to share information with her. I am looking forward to scheduling another Skype visit with her soon.

My mom had to go out of town last week to care for my sister after her surgery. My mom does all my pills so I had her fill them up for the entire week in case she couldn’t get home. She was in a hurry but took the time to do it. The next day I felt my pill organizer. We have a locator dot or bump put on the side of the organizer that symbolizes my morning pills. I took my pills out for the morning and discovered that there were a lot of them. I started to count how many there were and realized they were the evening pills. So I felt the night pills and confirmed that they were the morning pills. Again I ask you “who’s blind here?”

Sunday was my 28th birthday. I ended up having more than 60 people wish me happy birthday. That made my day much more enjoyable that I received so many wishes from my friends. Every year on my birthday I celebrate that I have made it through another year of fighting Wolfram Syndrome. It’s another year that I am here and I cherish every minute.

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Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren Gibilisco

Lauren Gibilisco

Last week I visited my neurologist.  He asked how I have been feeling.  I told him that I have been feeling fine but I am very tired.  I sleep 12 hours at night and I take two hour naps a day.  He said maybe my problem is that I am sleeping too much which can cause you to feel tired.  I told him that I cannot stay awake.

He asked what I do during the day and suggested that I do more activities.  I told him I do exercise a lot all through the day.  He asked what type of exercises I do.  He said it was important to get my heart rate up during exercise.  I told him I can’t do that.  Because of my heat intolerance I can only do short bursts of exercise throughout the day.  He asked what else I do.  I told him I watch movies but I get tired of watching the same thing over and over again.  It does me no good to watch a new one because I can’t see what is happening. 

I told him I like listening to music and dance around but again I can’t do it for long because I get hot.  He told me to take a walk outside.  But again I told him I can’t because I have to have someone to guide me along because of my ataxia. I can’t walk straight and get lost real easily. He said I needed more brain stimulation.  He asked do you do braille?  I told him I did learn but because of my neuropathy in my fingers from poking them for blood sugars for 26 years, it makes it very difficult.  I read very very slowly and put myself asleep waiting for the next word.  LOL.  He suggested I walk on the treadmill slowly and for a longer time and try to work up my endurance.  And lastly he suggested taking Vitamin B12 every day. With all my health problems I could easily be deficient. He also wanted me to test my oxygen saturation levels wearing a clip on my finger for 24 hours.  I’m going to get that done tomorrow so I can tell you the test results next week. 

At that point he scooted back and said “you are a challenging patient.”  I told him “thank you very much.”  He laughed and I said “I enjoy being different.”

This should tell everyone how different we WS people are.  I can’t stay awake and Adam wrote in his blog last week that he can’t get to sleep. We should switch for a day then he could get some sleep and I could stay awake. 

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Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren GibiliscoWell I managed to drive my mom nuts this week.  I have many items in my house that talk to me so I can function better.  But this week my watch stopped working. 

It was a talking watch.  Without it I have trouble knowing what time it is.  Time is important in our lives.  We need to know when to give shots or medicines. We need to know what time it is to eat or even what time it is to take a nap or go to bed. Our lives revolve around the clock.  So all throughout the day, I constantly asked my mom “what time is it?” It was a long week for her until my new watch arrived. 

When I went to my volunteer job this week I bumped into someone in an office.  It was someone else’s office so I didn’t know who it was.  That person said you still don’t have my voice memorized yet. She told me she was Barb.  When my parents owned their grocery store I had trouble always remembering voices especially because I have hearing loss.  I came up with an idea to always say hello and they would have a name made up that started with their first initial.  For example, Brianne would come up to me and say “hello Bambi.”  Well when I told Barb about that idea I told her to make up a word starting with “B”.  She said “I’m not going to call you that Lauren.” Everyone including myself burst out laughing.  I said “that didn’t occur to me.”  She said she would call me “beautiful” but I told her “brat” sounded more appropriate.  Going along with this theme, I was talking to a friend of my moms.  She asked if I was going to dress up for Halloween. I told her no.  She said “come on, you could dress like a princess and your mom could dress up like a witch.” I told her jokingly “she doesn’t need a costume for that.”

One of my mom’s friends hated thinking of me home alone in our house all the time.  I have no friends in this area.  So she decided that every other Friday she would come get me and we would go to lunch or dinner together.  She has known me since I was 5 years old.  I bet she thinks it is no big deal, she enjoys herself.  But to me it is a huge deal.  It gives me something to look forward to every other week.  It gets me out of the house.  It gives me someone other than my mom to talk to.  So look around, you may see someone who needs a little help.  You might think it was nothing but you might have made that person’s day a lot more happier.

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Living With Wolfram Syndrome – Lauren Gibilisco

I mentioned last week about feeling like a prisoner in my own home. Let me explain it a little further.

Photo of Lauren Gibilisco

Lauren Gibilisco

This is what it is like for me day to day in my own home. During the summer in Nebraska it is very warm here. I cannot be outside long if it is above 70 degrees. So in the summer I am pretty much stuck in the house. But the same thing goes inside the house. I need the temperature to be no higher than 65 degrees in the house. This is what is comfortable for me but it freezes my Mom and Dad. I also feel bad because it makes our air conditioning bill so high. Any hotter and I have trouble sleeping and exercising. I love to exercise but I can only do it a little at a time because I get so overheated. So, when I am home I either just exercise or watch TV. I only watch what I have seen before because I know what they are saying and doing. But, unfortunately it becomes a little boring watching the same shows over and over again.

Last week I was able to leave the house and go to an outside wedding. There was a nice breeze and it was a little above 70. I was able to enjoy the wedding because I was just standing there. I could only stay for about an hour though because I began to get overheated.

The winter time is a little better for me. I am able to exercise more and go outside to chill out if I become too overheated. It used to be that it was hard going outside if there was snow on the ground. Everything was white and I couldn’t see where anything was, like the sidewalk or street. Now my vision has gotten so much worse so it doesn’t really matter anymore.

I do not say these things for pity or to depress anyone. These are just the cold hard facts of living daily with Wolfram Syndrome. So that is why I sometimes feel like a prisoner in my own house. But I wouldn’t change anything. This is who I am and I love being who I am. So if you ever see anyone outside in the winter wearing only a T­-shirt and shorts, don’t worry it’s just me.

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Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren GibiliscoI’ve had a few incidences lately due to not being able to see.

The first one was when we went to Olive Garden to eat.  When they took us to the table my mom told me it was a booth so I needed to scoot down.  So I kept scooting expecting to run into a wall but instead I almost sat right on this ladies lap that was beside me.  My mom forgot to tell me it was an open booth so there people on both sides of us.  Of course once again I was embarrassed and promptly told the lady that I was very, very sorry.  I told her I was blind and she said that’s ok, she was fine.

If I haven’t told you, I shred paper for our local telecommunication center.  Who better to do it than someone who can’t see what’s on the confidential papers.  So one day I went to get someone’s shredding and I couldn’t find it.  Usually they put it in front of me.  But this girl didn’t get up to put it in front of me and proceeded to tell me that it was over there.  I turned a few times and she kept saying over there, over there until I found it.  Once I got it I turned to her and said, “Were you pointing your finger?”  She said “yes, it’s just habit.”  Then they all started laughing because she knew that I couldn’t see.  It just a habit to point to people when they are looking for something forgetting a blind person can’t see them pointing.

I was always colorblind but now I can’t even see colors.  It is pretty much just light and dark but mostly dark.  I have trouble knowing if a light in the house is on or off during the day because of the sunlight coming through.  My mom and I went shopping and she ran into some really cute clothes that she thought my sister would like.  She turned to me and said “isn’t this cute?”  Of course she knew what she said but then she said sadly that I really wish you could see.  It’s just like a right of passage that a mother and daughter could go shopping together and have a fun time looking at clothes.  It doesn’t bother me much but it really bothers my mom.

My mom works hard during the week.  On the weekends she tries to get some projects done.  A couple of weekends ago she needed to paint the garage door.  Of course it was a very hot day. Temps were in the high 90’s.  I really wanted to help my mom out.  I like being able to do things for my mom.  So I asked her if I could help.  She struggled to find the right words to say to me. She said “I really wish you could but for one it’s too hot for you to be outside and that she really was worried I would get more paint on the driveway than on the door.” Lol.  She was probably right.  So I went back into the house feeling like a prisoner in my own home.

 

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