Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 , when Mom said what she said I just sat down right where I stood, my legs just gave out. I have no idea what I said to her. I just freaked but I did get my head together after the initial shock! Mom called me back later and was so sorry about that phone call. Now she has become kind of used to Dad's "Fits", that's what Mom calls them. I sure can identify with you about your phonecall that night. I get scared when ever the phone rings at night! I bet your Dad really felt awful after he realized what he said to his little girl. Kids do tend to take things literally. karol Karol I would have had a heart attack if my mom called and told me that! My dad called me one time at work at like 2am told me he couldn't wake my mom up. She was shaking all over and bouncing around on the bed. She was of course having seizures. I was working alone at the time and had to get somebody in to cover for me so I could leave. Very scary moment! Dad was so out of it at the hospital when they asked him if this had ever happened to mom before he said no. And it had. About 25 years earlier. She had a few of them. One time she was working and she fell on the concrete and fractured her skull because of one. The first one she had, us kids sat there and saw it and didn't have a clue what was going on! When dad came home he told me that everything was going to be okay, they had put mom to sleep, well I started crying and yelling because I thought they had killed her! I mean, when you do that to a dog, they are dead!! Dad quickly realized what he said, and reassured me she would wake up! I was maybe 12 at the time. Scared the hell out of me! "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 You are really lucky that you have you Dad so close. I wish my parents were closer but that's not gonna happen. They are comfortable where they are in the Tampa area and I like it here. I wouldn't do very well down there......I need some elbow room and that don't exist down there. I know it's hard that you and your son aren't talking. I wish I could give you some good advice but I'm not qualified. Without my going into detail let me say that my oldest son and I haven't spoke for years. I think it's to late for us now. I'm not sure what happened between you and your son Adam but I do know you were very upset. Adam will get over what happened. He probably just needs some time to get his head together. Most times that's all it takes. Hugs.... Karol Karol I can walk to my dad's in about 25 minutes, drive in 5. If I don't talk to him every day he gets worried! He has already called here this morning. He is taking it really hard that Adam and I aren't talking. Actually, he's not talking to me, I've tried talking to him and he just ignored me, so, I'll just wait him out and see what happens. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Let's keep our fingers crossed the weather man is right! My sister-in-law, who is 75 yrs old, has RA and she isn't do all that great. She's really having a rough time of it right now. We want her to come down and stay with us but she wants nothing to do with leaving Buffalo. Go figure. I don't get it. There is something about Buffalo that keeps my husband's side of the family there. Mac and our niece Carol are the only two that have escaped Buffalo. Hugs.... Karol Re: Karol One of the weatherman said the other day that this will be our last cold spell for the season. I'm just hoping he was telling the truth for once! "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Hi , I am not a city girl.....I just don't get into all the rush that goes on. That's probably why I like Crestview so much although things are changing here. I never spent much time in the city part of Buffalo. I lived in two different areas, one of which is now become a very rundown area, so I'm told, and the other is still very nice. We did go back to visit with my sister-in-law about six years ago but she moved to E. Amherst which is really a nice area. We visited her in August and I wore a sweater a good deal of the time! We had only two or three nice warm days. Everyone laughed at me but I do get cold very easy. Would you believe I keep a sweater in the car here, even in the summer months, because the stores are to cold for me! Hugs..... Karol From: (Brat) To: LUPIES Sent: Sunday, March 14, 2004 7:06 AM Subject: Karol Well Buffalo is getting better than it was when I was younger. I remember going through there and most of the buildings were abandoned and boarded up and it was really nasty looking. But the it's getting alot better. They are getting alot more jobs which they needed really bad. There are still some rundown places outside of the city. The city itself is looking really good. I just love their downtown. Rochester's has gotten alot better too in recent years. But the weather still sucks in both cities!! "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi , I think this is the first time I have read about your symptoms. You must be really.....upset....confused....and very concerned about what your neurologist said yesterday! I know I would be! This whole lupus thing isn't cut and dry like other diseases are, is it, and that really sucks! I sure hope you get to the bottom of what's causing you all the pain and discomfort. Gosh though.......who do you believe when one doc says one thing and another says something different. How the hell are you supposed to take care of yourself when you don't know what's going on or who to believe! Take care! Karol from new member Carmie My primary care physician diagnosed lupus in the fall of 2000. I went to him during the summer because I was suffering from extreme fatigue, nausea & stiffness in my ankles. My greatest concern was the overwheliming fatigue that I had been experiencing for about two months prior to the appointment. During the exam, he noticed & questioned my hair loss. I had lost some hair after the birth of my daughter in 1986, but was told that this was a common occurence after childbirth, and that it would soon grow back. It never did. My doctor ordered blood tests and based on those findings & my symptoms diagnosed lupus. He prescribed plaquenil, 200mg once daily, which I have been taking since November, 2000. Over the years, I have experienced periods of overwhelming fatigue and my entire body aches. I also started feeling numbness & tingling in both of my hands and it radiated up into my arms. There are times when I feel these symptoms in my feet & ankles, but definitely not as frequently as in my hands & arms. I mentioned this to him during an exam in the summer of 2002. He referred me to a neurologist to rule out carpal tunnel syndrome. This was ruled out, so my PCP ordered a cat scan of my cervical spine. The cat scan showed some narrowing in my spine, so he then referred me to a neurosurgeon. The neurosurgeon explained that stenosis & mild arthritis in the cervical spine is quite normal for someone my age (late 40s). He felt that the numbness & tingling was a result of the lupus and suggested that I go back to a neurologist. At the time, the only neurologist in my area was preparing to close his practice and move out of state. It was several months before a new neurologist was recruited. By this time, I just accepted the numbness & tingling. MY PCP had prescribed neurontin to help, but I was not able to tolerate it. He then prescribed elavil and I was not able to tolerate it, either. Last week I saw my PCP because I am in another period of fatigue. I mentioned that the numbness was still bothering me and that during the period of time when the fatigue is most overwhelming I have noticed that I am somewhat clumsy. I run into tables, chairs, walls, etc. and I seem to drop paper, dishes, utensils, etc. He referred me to the new neurologist and also ordered a new round of blood tests ( I haven't had any follow-up blood work since 2000). I saw the neurologist today who hinted that I may not have lupus after all and that quite possibly the plaquenil is causing the numbness. MY PCP said that I have peripheral neuropathy as did the neurosurgeon, but the neurologist is disputing this. He ordered additional blood tests as well as a cat scan of my brain to rule out MS (he highly doubts that I have it, but states that the test needs to done to rule it out). I am now at a point where I am so very confused. If I don't have lupus, then what is causing the fatigue and muscle aches? And if I have been misdiagnosed, what damage has the plaquenil caused? The fatigue gets so overwhelming that I cannot go to work. In the last three weeks, I have missed seven work days. Any suggestions or information would be very much appreciated. Thanks so much. Quote Link to comment Share on other sites More sharing options...
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