Attn: Michelle (Libra55) Hi

Discussion in 'Fibromyalgia Main Forum' started by UPK5, May 13, 2006.

  1. UPK5

    UPK5 New Member

    Hi Michelle,

    Thanks for clarifying your condition of IBD. I am hoping, that I had a fluke stomach problem that will not be here to haunt me. However, it was a very rough night and day today. It felt like an eternity! I am glad you have your condition under control and hope the set back, was minor and you will soon be back to feeling good again. Our bodies can do such weird things to us, but we have to be our own best advocates, and take care of each problem as it arises.

    I am directing this email specially to you, because you mentioned your 17 year old daughter with Aspergers, will be going to college next year. My son is 17 and will be going to college in the fall of '07. He is has HFA, he is so excited about "going away" to school and has been talking about it, for 2 years already.

    2 weeks ago, he planned a trip to Alfred, NY to visit the university and state college there. It was a very long drive from our home, but we did it. My son, took care of the motel arrangements and signing up for the campus tours. He has come such a long way, we are very pleased with his ambition and progress. He has definitely learned to be an advocate for himself.

    Is your daughter going away to college? Did you look at many universities? What is she interested in? Has she ever been away from home before? I am curious to know how this is working out for her and your family. They do grow UP so fast, regardless if we suffer from FMS and/or other related illnesses!

    How is your 15 year old doing? Do you have another girl or a boy? I have a 13 year old boy, who will be starting a competitive high school program for science and math studies. Both kids are very bright, except one has struggled with ADHD and Aspergers and the other has suffered with being a brother of an ADHD and Aspergers child. They both are great kids. The younger one applied to many high schools throughout the NYC area. The high school he was accepted to is close to our house, has an excellent reputation and in 2004, had 4219 applicants and only 85 placements. I am very happy that he was accepted into this program. I hope he can keep up with the work.

    Michelle, Happy Mother's Day! I hope you enjoy your day.

    Best Wishes,
    Cindy
  2. UPK5

    UPK5 New Member

    Michelle, I want you to see this, bumping it back to the first page. Hope it stays there, long enough for you to read it.
  3. libra55

    libra55 New Member

    My daughter will be going to Roger Williams University in Bristol, RI about an hour from home. (We live in MA). It is far enough for her to be independent, but close enough for us to get there if need be. She is also very high functioning. She will be studying Visual Arts.

    She applied to 12 colleges, was accepted at 9 or 10 I think. We visited quite a few. Some were an absolute no-go; mostly due to the housing situation, off campus very unstructured environment, rooming with 6 or more other people, where she definitely would not survive.

    Roger Williams just "felt right", to her and to us. They have a terrific art program, very small department, we met some of the professors. There is also the advantage of being part of a larger university where she can study other things that interest her like history and philosophy.

    The disabilities office was pretty good about the Aspergers, they seemed to "get it" and said they had other student with AS on campus. They offer supports and tutoring. There is free mental health services on campus. The housing director was very accommodating and is going to secure a single dorm room (which I need to check on next week). The campus was warm and welcoming to us. We went there three times to make sure it was the right place. I hope things will go well. It will be a tough transition.

    To answer your question my other daughter is NT, might have a little ADHD but has had no formal interventions. It's hard too for her to deal with a sibling with AS. She is very social and it's hard for her to explain to her friends why her sister is so "weird and different".

    Does your son have a license? My daughter just got hers two weeks ago. She is so proud and so are we. It took her a long time to master it. It's so hard when their peers are ahead of them in so many ways. High school has not been easy, they did not get the Aspie piece at all, our high school is all obsessed with dyslexia and the language-based disabilities which of course is not where our kids have problems. I'll be so glad to see her get the diploma and out of there.

    Great job for your son to be able to do the travel and motel arrangements on his own. My daughter has a lot of trouble with her executive functions. I find if I gently get her started and step away she will go to it, but I wish she was more of a self starter.

    Thank you for asking about my Crohn's. It seems to be responding to the prednisone. I am better today, hope it keeps up.

    Happy Mother's Day - Enjoy!
    Michelle
  4. libra55

    libra55 New Member

    the board is fast today

    m
  5. UPK5

    UPK5 New Member

    Hi Michelle,

    I just read your letter. We went out yesterday, BIG MISTAKE. I was at my sister in laws and spent the majority of the visit in her bathroom. Not pleasant.

    At the end of the gathering, my husband felt ill, and went outside, and threw up. We left shortly after.

    We are both home from work sick today. He has it on one end, and I the other.

    My kids went to school, but at 10 AM my younger one, called saying he threw up and needed someone to get him.

    I am hoping that this is a sign that I have a virus. A nasty one at that, but nevertheless a virus.

    I want to respond to your informative letter, but will need more time and want to feel a little better.

    Just wanted to say hi, and I will write soon. You can write in the interim, if you feel like it. Do you agree I probably have a virus too? I hate going to inept doctors!

    It is so nice to meet you.

    TTYL.

    Smiles,
    Cindy
  6. libra55

    libra55 New Member

    Sure sounds like a virus to me! I hope you will feel better very very soon and I hope it is not any kind of bowel disorder, they are exasperating to live with. I think you will be fine.

    I hope your family feels better too.

    ((((((((Hugs)))))))
    Michelle
  7. UPK5

    UPK5 New Member

    A quick update...(ok, quick is not in my vocabulary)

    My FMS is kicking in, my back is hurting and needs rest.

    Unfortunately, my bowels are still really loose. I made rice, thinking that would help firm things up. So far, nothing is doing the trick.

    Have any good suggestions? If it is a virus, is there any meds that the doctor could give me, to stop the runs? Immodium and Pepto didn't do anything, so I stopped them. My internist told me when I went to him for my migraine help and was suffering with intense pain, "deal with it". He gave me a name of a neurologist (who made my condition worse) and said just WAIT until he diagnoses your problem. I am so apprehensive to see this doctor again, but I don't have another doctor now.

    Oh, by the way, my older son, came home from school and went right to the bathroom to get rid of whatever was hanging out in his stomach. He said, he didn't feel right all day. The younger one has been sleeping most of the day, woke up once in between to throw up again. OY!

    Sorry to make this email so nauseating.

    I really am a more FUN upbeat person. Life happens, hmmm so does ...!

    I truly look forward to more interesting correspondance with you. I have many things to comment on from your other email. I also have a great book to recommend for your younger one, but I want to find it to get the correct title.

    Thanks for your input. Hope my germs are not contagious via the internet.

    Smiles and hugs,
    Cindy
  8. libra55

    libra55 New Member

    No definitely don't send germs my way, I'm immune suppressed!LOL

    Try to stay hydrated. If water doesn't do it, add Gatorade and Pedialyte. Stay on that bland diet. You can eat baby food too (sounds gross but it works). Eat apples too, they have pectin which solidifies the stools.

    You didn't say how long you been going with the diarrhea.

    Imodium is a double edge sword. They told me in the ER not to use it because they did a MRI on my abdomen and they could see the inflammation in the colon, and said I would get all bound up and it would be worse.

    Do you have a lot of cramping with it?

    I would keep track of how long it goes on, how many times per day, if it doesn't stop call that doc back and keep on calling him, and go to ER if you have to. Keep track of your body temperature. If you get too dehydrated they will give you IV fluid and that will help.

    Some of these doctors need a good dose of this eh? My doctors are good about responding but some are just the pits.

    Stay in touch ok?

    ((((((Hugs)))))))
    Michelle
  9. UPK5

    UPK5 New Member

    Dear Michelle,

    Thank you so much for your medical advice. I really appreciate it.

    The symptoms started Friday night. I had a LOT of cramping and churning then. As soon as I thought I was finished, more came out. My stomach was churning and cramping so much, I was up most of Friday night. I would get very HOT and very cold. It was brutal. I knew they weren't HOT flashes either.

    Saturday was mainly a day of rest and sleep, in between running to the bathroom.

    I have been drinking herbal tea, seltzer, and today I did have some gatorade. I am aware of dehydration and I know it is better to drink (the right liquids) than to eat food.

    Saturday afternoon, when the d. kept flowing, my husband went and bought a 6 pack of Immodium. I read the directions. It said not to take more than 4 in a day. So I took 4 on Saturday, 2 yesterday and now I am finished with the box. I didn't bother getting more, because it didn't help! Now, I surely won't get more because of what you just wrote to me.

    Yesterday, I messed up, with my diet. I thought I was feeling better, so I went to my s-i-l's house for Mother's Day. I was careful NOT to eat all the delicious foods she served, but I did have a nibble here and there. A big NO-NO. That is why I spent the afternoon and evening in her bathroom. I am embarassed to count how many times I went there. I was a conscientious guest, as I cleaned the toilet EACH time I went. No wonder, nobody saw much of me, yesterday!

    Today, I was home and although I have had the loose movements, the frequency (esp. compared to yesterday) has diminished. The cramping and rumbling seems to be subsiding.

    I am a teacher and decided not to chance going to work again tomorrow. My whole family will be home. I hope they can't recontaminate me. I called the substitute who worked for me today. She will be 86 in a couple of weeks, and she is quick on her toes and capable of taking care of and assisting with the 4 year olds. I teach UPK (universal pre- kindergarten). I have 18 kids in my class. My 17 y.o. son with AS has only 12 kids in his class!

    I just took a quick look to see if I could find the book I wanted to recommend to you. It might be downstairs. I will look later or tomorrow.

    Michelle, thanks again for your excellent medical advice and your wonderful emails. I have been enjoying reading them. They have been like chicken soup, via the internet! ;)

    With smiles and hugs,
    Cindy
  10. libra55

    libra55 New Member

    You were so sick, that's the pits to have diarrhea at someone else's house. I truly hope you're feeling better by this time. Seriously I would call the doc if it doesn't stop.

    Hey I didn't ask or maybe I dont remember (FM fog), did you have a stool culture? Maybe the doctor can order one for you. they usually do those to rule out bacterial infection and parasites before they go any further with a diagnosis.

    Feel better hon!
    Michelle
  11. UPK5

    UPK5 New Member

    Good afternoon, Michelle,

    I am finally feeling much better. My whole family stayed home from school and or work today. However, all of us are feeling better. What a relief.

    I did not have a stool culture done. I did NOT go to the doctor. I was too apprehensive about dealing with my doctor who told me to "just deal with it" (when I went for migraine help) and when my entire family had the flu, I made an executive decision that it most likely is a virus that needs to run its course. I have not RUN to the bathroom today, except for #1's! My stomach is NOT making any annoying gurgling sounds today either. I think, going to my s-i-l's took a day away from my healing. Oh well. I just hope her family or any of the other guests don't get it.

    Now, here is some information for you.

    In today's Newsday, there was a big article on Chrohn's. I specifically read it, with YOU, my new friend, in mind. You can access the article by doing a google for Newsday.com. It starts on page B-10 in the health section. They speak about an Australian physician, Dr. Thomas Borody and his theory. Interesting enough, I went to hear Dr. Tony Atwood, who also is from Australia speak about Asperger's. I had been highly recommended to read his book that had clearly defined what Asperger's is all about. If you haven't read Atwood's book, I highly recommend it to you also.

    The book that I wanted to recommend to you that might help your 15 year old understand Asperger's from a child's point of view is called "Autism Through A Sister's Eyes: A Young Girl's View of Her Brother's Autism." My girlfriend in Maryland also has a child with Asperger's and personally knew the child &/or the psychologist who helped her patient write the book. It is written by Emily Hecht with Dr. Band's assistance. Emily's family knew she was having a hard time dealing with her brother's behaviors. Instead of all the attention going to the brother, they allowed Emily to work out her own frustrations as a sibling dealing with these problems, by seeing a therapist who helped her write her feelings down as a therapeutic vehicle. Initially, they were just writing down her feelings and frustrations, and never intended to publish it. I happen to have an article written about the book too. Here is something from the newspaper article:

    Wide spaces between the story's lines, large print and easy to read words help make the story digestible for children, but it is not exclusively geared toward them. The book's tone is candid and, even when discussing medical terms in simple terminology, is never condescending. Compelling anecdotes and uncomplicated descriptions of autism's symptoms flow together for a smooth read. Emily's inner conflicts with her brother are depicted together with her mature sense of understanding.

    The book is published by Future Horizons, Inc. There is an 800 # listed, (I don't know if it is still valid) 800 489-0727, but it is worth giving it a shot.

    Hope you are having a good day. It has been POURING here in NY for 2 days. How is the weather up in your neck of the woods? They say, "When it rains, it pours!" And with my whole family getting the stomach flu at the same time, it is very apropo!

    Looking forward to your next email.

    ((((((Hugs))))))) and Smiles :) :) :) :),
    Cindy
  12. UPK5

    UPK5 New Member

    Michelle, wanted you to check out an article I read in today's Newsday (5-16-06) and I also sent you the name of a great book for siblings of kids with Aspergers.

    Hope you find the information helpful and useful.

    Smiles and (((((Hugs)))))
    Cindy
  13. UPK5

    UPK5 New Member

    I hope you are feeling okay and are able to read the information I sent to you, above.

    Cindy
  14. libra55

    libra55 New Member

    So glad to hear you are feeling better! The weather was good here today (MA) for the first time in ages. I was able to get out to Wal-Mart and get some plants and actually do a little planting.

    I have Tony (Attwood's) book, and my friend let me borrow the video tape. Isn't he awesome? His website is really good too.

    Thanks also for the Crohn's info. I still feel like I have a washing machine in my stomach but at least the diarrhea has stopped.

    There have been many threads on this forum about autism, Aspergers and the relation to FM/CFS. Many people on here have kids on the spectrum. We seem to share the sensory overload issues. My husband definitely has strong Aspie traits and so do I, but not the same traits; I am more bookish and withdrawn and he has the hair trigger meltdown temper that is so common in Aspergers. What a pair, eh??

    Thanks for the book recommendation for siblings. In all fairness she copes pretty well. She is really social and wants to have friends over all the time, and the older one is not social and gets stressed when too many people in the house, so it's a constant balancing act with those two.

    Continue to feel well (Fingers crossed)

    Michelle
  15. UPK5

    UPK5 New Member

    Hi Michelle,

    I am glad you are feeling better and got outside and did planting. It feels good to be in the great outdoors. My husband bought a flat of impatients for me for Mother's Day. I was SO SICK, I said, honey, if you could plant them for me, that would be a great Mother's Day gift. He didn't know what to get me, and I had NO strength to do ANYTHING, except go the bathroom! I barely had the strength to do that, but I had NO choice! Boy, I'm glad I'm NOT a cat! YUK! LOL!

    Today it felt SO great to feel good again. Wow, what a difference. After feeling so sick for 5 full days, today I was floating on air. It was great to be back in school and working.

    I am taking a graduate course. Tomorrow is my final. I MUST study. I was UNABLE to study, think or concentrate while I had this flu bug. I started studying yesterday, and reviewed a little today. I am taking a speech and language course (it is like learning a new language). It is very interesting, I have learned a lot, but there is a lot of jargon I am unfamiliar with, because I have always sudied education and psych.

    I also take yoga. No exam there! My class is in an hour. Taking yoga (kripalu) helps me feel much better, as I get to stretch out my back, knees and other tight muscle areas.

    The book I recommended for kids, just helps a "normal" functioning child understand how it feels to be a sibling of a child with Autism or Aspergers. It was written by a kid, who didn't get why her brother was so odd. I thought I would mention it to you. It is very easy to read, and it is the only book I know of that is written by a child for other children from her point of view and how she copes. To tell you the truth, my 13 y.o. son, WOULD NOT read the book. He has learned how to deal with hs brother very well on his own terms. I liked the book, regardless.

    My older son, used to have extreme problems with socialization. We were able to get him non-public school funding from the board of ed. So, he is in a fabulous private school (since 5th grade) and they have been working with him on socialization skills since he started there. He sees a psychologist (1:1 1x wk) and he is in a small group (4:1) for therapy 1x per week. He used to be the outcast at his school. Everyone excepted him for being highly intelligent, but NO ONE wanted to hang out with him. Now, he has made friends. He decided to grow his hair long, he listens to music (and discusses music with his friends), he jokes around with others and has come full circle from where he started. He always was successful with the academics, but socially had tremendous problems. We are so proud of the strides he has made. Asperger children don't have innnate social skills. They need to be taught how to make a friend, how to read social cues, etc. It is so weird, cause I am OVERLY social. My immediate family, begs me to please mellow, cause I'm too friendly. I also live with all guys! I was brought up in a very social environment. I also raised Jason (my older son) since he was a baby, in a social environment, but it just didn't come to him, like it naturally would to many others.

    I am glad you finally read my email.

    Smiles and hugs,
    Cindy