I had a beautiful Madame Alexander doll when I was 8 but as a dumb kid would do, I left her in the driveway and the car tire crush her head. Now all the MA dolls look alike and what a dumb look it is.      Message From: (BJ) Date: Mon, Aug 7, 2000, 9:20am To: (Elizabeth Christian) Subject: Re: Dolls

My parents, especially my mother, had rather expensive tastes in children's toys and not always appropriate. I certainly didn't appreciate it. My first two-wheeler was a foreign racing 10 speed and all I wanted was a one speed Schwin like all the other kids. I was always trading it to ride a Schwin.

The doll was a 14 inch girl doll with loads of fancy clothes - like today's Barbies. I wasn't very any good at taking care of my toys .. especially dolls. I was too much of a tom boy.

    I look back now and wish I had some of them.  

I don't remember ever naming any doll. I just referred to them by whatever the box said. I guess that would mean I called her Madam Alexander. I really don't remember any other dolls except Betsy Wetsy and Tiny Tears although I can see in the Christmas pictures that I'd get more than one doll every year.

I got a Raggedy Ann doll for my 21st birthday. That was a hoot carrying an obvious doll box across a college campus. The doll was a joke from my parents.

There as a pearl ring in her apron pocket.

My mother never had anything from her childhood. My father had the train set from his childhood.    





Message From: (BJ) Date: Sun, Jun 25, 2000, 7:30am To: (Elizabeth Christian) Subject: Re: Your own experiences...I would like to know

I wish I had an interesting altruistic explanation for why I chose education of the blind as a field. The reason was that I became bored teaching regular third grade with the same things year after year.

I wanted to stay in teaching and knew I needed an advanced degree to go further. I couldn't afford to go back for a MA on my own and the government was paying for continuing studies even including a living stipend for teachers willing to become Special Education teachers.

I thought that sounded like a good deal but the only type of disability I could imagine working with was the blind and visually impaired. Little did I know that medical science was about to discover how to save all these very sick premies which resulted in a flood of severely multi-handicapped children who just happened to also have a vision problem. By the time I had to stop working the blind child with average ability was a rarity.


Why can't anything be easy. The sprinkler repair people had incorrectly programmed the timer after their last service call. I reported it and requested that they reprogram it. Yesterday a man came and Demi let him into the garage and then she left on one of her "errands". He made noise and then left about fifteen minutes later without ever talking to me. When Demi returned she informed me he had replaced the timer. My time worked perfectly. They were just supposed to reset it in - other words correct their error. I called the office but they have an answering service on Saturday. I can feel a fight coming on. Demi never should have left me alone with a stranger in the garage but that is another story. Fran came and the tegederm dressing is fine; so we chatted for awhile and she'll return Tuesday unless I call her with trouble before then. I dropped a couple of hints about wanting to get out but she didn't react. It would have been fun to go out with her but she is doing so much for me as it is that I wasn't about to push. We had another good rain storm and I can see where cleaning the gutters made a big difference. I no longer have a waterfall down my kitchen window. I should have taken up Mr Berry on his offer to do the gardens. He would have done a better job than Justa's husband but at least it is done. Demi's jeep is broken again and I'm allowing her to use my van for selected things. This is supposed to be her half day off but with no wheels and having to care for Zena she'll probably stay around which means Veta and I really won't be able to talk openly. I would really like a quiet stressless day and not one filled with problems but until Demi's jeep is fixed and the sprinkler timer situation is settled, I don't think that is going to happen. I guess I should just be happy that my sore spot is healing nicely and I'm not in pain from that any more. Sunshine Smiles, Barb    



It is the people with MS who use Jooly's Joint that make the service a success. 'Spotlight' features interviews with JJ members from around the globe.

Spotlight on... Barb Florida, USA

Introduce yourself!

"I am 56 years old, or young, depending on how I feel on any given day. I'm single and live in southwest Florida with one very spoiled dog and a live-in aide. I happen to be one of the 'lucky' few people who progress to being extremely limited. I only have use of my left arm/hand (wouldn't you know, I'm naturally right-handed) and, thankfully, my head." When did MS enter your life?

"Unofficially, my first attack was in 1966, but I wasn't diagnosed until 1972. That was before the MRI was known and I was diagnosed by a process of elimination. After everything else was ruled out, I was told it was MS, but to keep it a secret because I'd lose my job if anybody knew. My neurologist refused to write MS on any report. At that point and for the next 12 years, MS was a 6 week minor inconvience every 6 years. Then it became secondary progressive and the real 'fun' started."

What do you now know about MS that you wish you'd known when you were diagnosed?

"Everything! Back in 1972 not even the doctors knew much. The things that were written were years old and no help. There was no Internet to search for information. "

Lowest point in your life with MS "That would have to be 1987 when MS progressed to the point where it forced me to go on disability retirement. At that point, I made what turned out to be a very intelligent decision, but at the time, caused many tears. I left my home and friends in NJ and moved to a small town in SW Florida because the cost of living was much lower and I had siblings who were saying very supportive things. Both reasons have proved to be very wrong, but thanks to some fabulous friends, I'm as happy as can be under these circumstances."

Highest point in your life with MS

"I think discovering Webtv, which allowed me to get online from my bed using the TV as a monitor, has proven to be the best thing. It has saved my sanity. Because Webtv uses a cordless keyboard, I can email, chat, surf the Net, create Web pages and be a part of Jooly's Joint from my bed using only one hand." What do people with MS need to help them enjoy fulfilling lives?

"A very big sense of humor which includes the ability to laugh at the dumb things your body does without consulting you first." When and how did you discover Jooly's Joint?

"It must be over 2 years ago that an email pal gave me the link to Jooly's. Since then, I've shared my daily ups and downs with many good and close email friends who can share these same feelings." What keeps you coming back to Jooly's Joint? "Almost every week somebody mentions something about a symptom that I had dismissed as just me. It is so reassuring to know there are others who share these things. It reminds me that I'm not so alone in this, which because I'm home bound puts things in a perspective that I can't do alone. " What are your ambitions?

"I just try to enjoy every day and not dwell on the many 'what ifs'."

What message would you give to newly diagnosed people?

"Try not to over-react. Get as much information as you can handle. When you are emotionally ready, talk with other MSers and never give up hope. There are new discoveries being made every day." Back to MSer in the spotlight [MSers] [Family] [Everyone] [Fun] [Contact JJ] [About Jooly] [Map]

   Message From: (BJ) Date: Sat, Jun 3, 2000, 7:45am To: (Elizabeth Christian) Subject: Saturday

You won't believe the final chapter on the van repair story. On the way home with the van, Demi was pulled over by the cops. The date decal placed on the license plate which indicates that you have paid your yearly registration fee was gone but when the cop ran the plate, it showed that the fee had been paid. Demi went to the Motor Vehicle Dept to get a replacement decal and was told that we had to report it stolen to the sheriff in order to get a replacement. By that time Demi had looked at the plate and could see where it had been torn off.

Demi came back and I, as the owner, called the sheriff's office and a sheriff came to the house within about 10 minutes. Demi gave him the registration and he started filling out the form when he got a call and had to leave. He must have been new because instead of just saying it was an emergency he told us it was an attempted suicide. Unfortunately when he left he took my registration with him. After I had my lunch another officer came. He had been given my registration by the first officer. It took almost an hour for the report to be written then Demi and I had to raise our right hand to swear it was the truth. Since my right arm doesn't move, Demi held it up for me which got me giggling.

To make a long story short (well I guess I didn't really do that). Demi then took the report number to the DMV and was given a new decal and registration. I later learned that if we had paid $15 the first visit to DMV, I would have gotten the decal right then without all this bother. Why is nothing simple? We figured out that the decal was taken while my van sat in the lot at the repair shop for a month. Other than that yesterday was just a normally quiet day. Demi must have brought a lot of stuff back. With my van and all her stuff there isn't room for her jeep in the garage. She has been constantly unpacking things and trying to find places to put things.

Zena is very comfortable in this quiet house and can find her way around to some extent. She can't find the lanai door so Demi has to carry her every time she needs to go out. If it were just Demi's decision she would probably have Zena put to sleep but Zena is Char's dog. Zena adopted Demi while Demi was living with Char and when Demi moved in with me so did Zena.

I am a nervous wreck about today's visit to the ER. I'm not concerned about what the doctor will say because there really isn't much he can say. I'm concerned about how they will get me on the table and what will happen if I'm forced to wait a long time.

Today is just another sunny, hot, dry day in Florida. I sure hope it doesn't get too hot before 10 when Fran wil be here to go with us to the ER. Sunshine Smiles, Barb

   Message From: (BJ) Date: Sun, May 28, 2000, 6:03am To: (Elizabeth Christian) Subject: Sunday I guess it was inevitable. When Fran came yesterday she was able to diagnose my sore as a decubitus (bed sore or pressure sore). She went out and bought stuff to clean it and some skin covering that allows it to breath but keeps the moisture in. It is much more comfortable now but whether or not this will heal it is unknown. What I really need is to have it seen by a doctor.

Of course nothing can be done over a holiday weekend. Fran knows an excellent Dr. in Fort Myers and has a call in to her with hopes that she can recommend somebody for me to see here. Of course there are many obstacles to over come before I can go anywhere such as transportation.

Fran is a real go getter and I know I can rely on her to help. We must have talked for 4 hours yesterday. We talked about trying to find somebody as a live in aide. She thinks my situation and needs should make it perfect for the right person. The trick is to find the right person and to keep Demi until a replacement can be found. Fran told me I need to be rolled on my side 4 times a day not just the 2 times that Demi does. I know Demi is going to be unhappy hearing that but she may take it better coming from Fran. That is if I can get Fran to come while Demi is here. Veta is going to come at 1 today and roll me on my side. I'm to stay that way until she returns at 5. I've ask Scott and Pam if they could check on my during that time. I really don't like being alone while I'm on my side but it can't be helped.

This has made me rather depressed and I slept off and on all yesterday afternoon and evening as well as my normal sleeping at night which is how I react when depressed. Sorry to dump this on you but it is occupying my thoughts so much that I can't think of much else. I know that once the skin starts breaking down it is a perpetual fight. I really have been very lucky not to have had problems before this with having been bed bound for five years. Not so Sunny Smiles, Barb

   Message From: (BJ) Date: Fri, May 26, 2000, 3:03pm To: (Elizabeth Christian) Subject: Friday Things have finally settled down and I can get to my email. Joan didn't arrive until about 6:30 last night. Demi was a bear until then. She became all sweetness in front of Joan. I wish there was always somebody else around for Demi to try to impress. Demi rented a mini van for the trip but didn't leave until almost 9 this morning. She had taken Zena to Char's last night and must have been able to relax without worrying about Zena all night. I don't remember the last time she slept so late. I woke up at about 5 but by the time I'd been online for a few minutes Justa came to give me my bath. Then Joan got up followed shortly by Demi. After Demi left Joan and I talked until about 11 when she had to leave. My cleaning lady came and while she was here Justa returned to give me lunch. Lori just left and I have a couple of hours before Veta arrives. I am so tired I can hardly think straight but I wanted to write so you wouldn't worry. I can't remember the last time I tried emailing at this time of day. Webtv is much friendlier in the early hours of the day. Barb      Message From: (BJ) Date: Fri, May 19, 2000, 8:10am To: (Elizabeth Christian) Subject: Friday I still want to know what you were hoping to accomplish by putting your keyboard in the refrigerator. Things are settling into a more normal routine now that Demi is committed to renting a vehicle for her trip. I can't believe that a week from today she leaves. As far as I can tell all my help is lined up. We need to get the groceries taken care of but my needs are simple. Zena was better yesterday and seems more normal today. Demi never took her to the vet but they have an appointment tomorrow. It appeared to me like it was a diabetic problem and the vet had warned her that this could happen. I'm glad Zena won't be staying here while Demi is gone. Char can take care of her. Heidi will think that this is her house again without Demi or Zena. The fire is still burning north of here. It must be moving north because we can't even smell the smoke. I feel sorry for people living near the nature reserve that is burning. Yesterday with all the stress gone I finally was able to do some more fussing with my homepages. I didn't do anything big but just added things to a couple of pages. There is always something to do if webtv lets me. The sore spot on the back of my upper thigh is hurting worse than before. Of course this has to happen on a Friday and the week before Demi is leaving. I'm sure I can arrange for a home health nurse to check it but I'll never be able to get a doctor to see it before Demi goes. I wish this thing would clear up once and for all. Everybody agrees that it isn't a pressure sore because it is dry and scaly but they don't know what to do for it. Last night I was watching WPIX on TV which is from NY City and they had the weather report of that line of really bad storms going through the northeast. That is one of the fun things of getting news from there. Not only can I see what is happening where I used to live but I can see what all my friends in that area are having to live through. Of course the most fun is watching a blizzard while I am soaking up the sun. LOL Sunshine Smiles, Barb    



      Message From: (BJ) Date: Thu, Aug 10, 2000, 6:20am To: (Elizabeth Christian) Subject: Re: Stressful time....

I feel like my life is continuing to spin out of control. I really wish I could get away from all this stress. I seem to be living close to tears a lot lately.

Justa never showed. I have written her off. She pulled this disappearing act on my when she first worked for me several years ago and when she returned I told her that I couldn't have it happening again. She said she'd be staying in Port Charlotte. Maybe I'm judging her too harshly and she had an accident but the result is the same. The last time this body saw water was Friday and I'm not fit to be around at the moment.

Fran came and thought she knew somebody who would come today. This woman wasn't home when Fran called and was supposed to call Fran last night. Fran was going to call me as soon as she head anything but she didn't call. Later this morning I'll call Fran if I haven't heard from her. Then I have one other person to try before I call the agency I use. I really need a shower and shampoo but the only thing I'll get from the agency is a bed bath.

As if that wasn't enough, Heidi is sick again. She didn't eat anything yesterday. Fran said hopefully Heidi is just reacting to my stress but we both know it is more than that. So this morning first thing I'll be calling the vet. Demi and I had words because I insist the Heidi be seen by Dr Stevens and Demi thinks that Heidi should be seen by the same jerky (my opinion) vet who saw her on Friday. Demi really likes that woman vet. Both Barb and I agree that Dr Stevens is the only Dr to see a dog there. Fran did say that this change in Heidi has come on much too quickly to be from Cushing's Disease.

I am not handling all this stress well at all. I'm not sleeping well and I'm not eating more than three or four bites at any meal. I really wish I could just have help making decisions. I know Fran is doing her best but I could really use a cuddle and kind comforting words right now. Unfortunately that is not a part of my life at the moment.

I have this image I've set up of a strong independent person but I'm only one vulnerable human helpless person with only one hand that works and the majority of my friend are on the other side of the keyboard. Sorry to be such a downer today.

Not Very Sunny Smiles, Barb    


Mail message Help

From: (BJ) Date: Sun, Sep 10, 2000, 7:06am To: Subject: Sunday

I am beginning to relax a little after yesterday's meeting with Ethel. I won't really relax until afteR

Demi has left and I see that things are working out. At least I have another resource for help in an emergency. I won't know the details of the final arrangements until Ethel calls me sometime this week. Since she works the 3 to 11 shift at the hospital she can't do the evenings but knows several people who she is sure will help. It is just a matter of working out the details.

The only comment that Demi had about Ethel was about her wanting to know where the vacuum cleaner was kept. Demi swears that it doesn't work. It works fine but she can't get it through her thick skull that the beater brush must be plugged in to the base and turned on. After almost two years. I've given up trying to explain that to her.

Heidi is eating much better now that Demi has stopped adding water to her food. I didn't know she was adding water. I have no idea where she came up with the idea of adding water in the first place. That sure isn't what the vet told me. He just said to mix the canned food with the dry food. Now I have to keep an eye on Heidi to see that she doesn't put on too much weight.

Demi has stopped drinking in preparation for her visit to her son. At least that is what I'm assuming. She hasn't shown any signs of drinking for at least a week.

Her son is a recovering alcoholic and she never drinks around him. Although she doesn't have the mood swings as often now, there is still an occasional outburst. I'm learning that she is a very negative person and is sure bad things are going to result from almost everything. I tend to be a cockeyed optimist who occasionally worries but on the whole I go though life thinking things will work out eventually. Unfortunately eventually sometimes is a long time in coming.

Wow, I must be feeling better emotionally. I've become an analytical philosopher. LOL

Sunshine Smiles, Barb