OT: Cromwell, Honora, Mrdad, Rocky, Melissa, Fredericka All

Discussion in 'Fibromyalgia Main Forum' started by 1sweetie, Sep 21, 2006.

  1. 1sweetie

    1sweetie New Member

    Hello Everyone!!!

    I have not been on the board very much lately and have missed our "talks". It was good to have a thread where we (and anyone that wants to join) could "chat". This is and never was or will be an inclusive thread. I have missed everyone.

    I did see a post from Honora. That made me happy although she was sharing sad news. Honora we are still looking for you and wishing you the best. I read and printed the article that you posted. You are enlightening my life. Please stay in touch. (((Hugs to you)))

    Anne, I need a Danny and brother update if you feel like it. The strangest things have happened to the posts that I have written to you. It started when I immediately replied to you when Danny was hit. I have lost so many post that I had put all my energy in that I thought it was meant for me to reserve my thoughts for awhile. Google spell check was eating my entire post for a few days. I'm sure I was doing nothing wrong. LOL

    Mrdad, where are you? We need you. I've looked at the board some and know you are still around. What have you done with Fredericka?

    Melissa & Sue, how are you guys doing? We were just welcoming you and we stopped posting. I enjoyed your post and was happy to meet you.

    Rocky, I was enjoying your encounters of the old West. You are quite the Historian. I so enjoy our history.

    Wake, I was glad to see that you joined the other thread. I did not realize that you and Anne have so much in common with having children that are special. I can't tell you how much I admire both of you for the love that both of you show. That "lioness" spirit of a Mom shows so in both of you. I told Anne that she reminded me of a special friend in my life that has a very special daughter. You do the same. Sincere admiration to both of you.

    To all other members that would like to just "chat" please feel free to post on this thread. I hope it will be a good place where we can talk and have a few laughs.
  2. Cromwell

    Cromwell New Member

    Good Morning!

    It is a fine morning in upstate new york. The leaves are turning though with the heavy rainfall this summer the autumn may be late. Columbus Day usually has fantastic color! We are fortunate to live within a short walk of all the schools with lovely tree lines streets and neighborhoods to walk round. So we get our walks in twice a day taking Danny over.

    The news re Geoff(brother) is that the doctors were optimistic about him as he had had a better week. However, he is still unable to talk as he is on a ventilator, although they were doing a trach. this week so maybe that will change.

    He is still in a really bad way and still listed serious but stable. We were going to drive up this weekend(again) but my SIL feels it would be better to leave it till columbus day weekend as he has no clue who is there or not and she feels we should wait. I agree. She is being awfully brave and has so much to deal with.

    Danny is doing well in mainstream. He has a great teaching team and so far is making straight As. As he is now doing work that is at least two years ahead of the work they were giving him in special ed class, this is truly remarkable and proves my point that they were dumbing him down.

    We also spend a lot of time educating him at home. We have continued to have some bullying issues and tormenting issues but we nip them in the bud right away. Danny is so sweet he never realizes when kids are being mean or setting him up. That social naivety at play.

    I too miss all the backchat and funny quips from mrdad and rockgar as they sure brighten what otherwise can be a dull day.

    Hope Honora is doing OK too. So come on guys let's have a little light music here. I need to read while I still have my eyesight intact after the latest dx and before my hands turn to real claws.

    Hope y'all are having a good day. Some nasty storms in the midwest I hear.

    Love and blessings,

    Anne
  3. 1sweetie

    1sweetie New Member

    I am glad to here your brother is making improvement even if it is so slight. Your sister in law is probably correct about waiting although I believe that someone in that condition can still hear to a degree. When I was very sick, although not a coma, I remember that I could hear people talking about me but could not answer. It is hard to see someone that you love on a ventilator. He will feel and be so much better when they can remove that from him. I had stomach tubes in my throat for several days at a time and it is a horrible feeling. It hurts, you feel like you are smothering, and it is nearly impossible to talk. I felt like a caged animal at the time. I think he will began improving when they are able to remove some those medical devices.

    Great news about Danny's grades. I wish my son could be with him at school for a few days and he would not have problems with people picking on him any more. Why are people so cruel? I just can not relate to anyone behaving in such a manner.

    In my lost post, I told you about my special SIL that is now 50. She went through so much while she was in school. It really affected my husband and still does. They withdrew her when she was in the 7th grade due to the actions of classmates. She was so innocent and they called her names and hit her. The last incident was they put grease all over her hair and tied it up.

    My daughter, who is special but not in the way we are using the word special when speaking of Danny and my SIL, was tormented when she was 12 and 13. She was and is a beautiful and intelligent woman but she was extremely shy. Due to her issues certain girls deemed her stuck up and harassed her. They were throwing rocks at her and I did not find out about it for awhile. My heart was broken. People never forget when they are mistreated for no reason. Jealousy is another evil.

    Let's hope that the guys show up. We need to lighten up this conversation! I am hoping that we can get everyone back together and add more people.

    (((Hugs to you))) Remember to take care of Anne! I have issues with my eyes and take special supplements for vision. You may want to research that and see if it could help you.
  4. 1sweetie

    1sweetie New Member

    It made me happy to see your post. We were having fun on our thread before and it would be great to have "conversation" with you too.

    Are you still doing much better while taking the antivirals? I had an appointment with Dr. Lapp for the end of Sept. and was going to ask him to let me try it experimentally but they just rescheduled the appt. until Dec. Oh well, what is a few more months. Did it help you with fatigue and cognitive problems? How is your son now?
  5. mrdad

    mrdad New Member

    I just wrote a long message on the "Prickles Post" and
    hopefully explained my absence! I'd rather be convers-
    ing with all my friends here than doin' what I've been
    forced to do. It's a challenge that I think I can meet
    to insure the long-term protection of my disabled Sister
    and her financial security for life.

    Gonna' try and "lighten up" this weekend as I am looking
    forward to my date with Fredericka!! I think she pur-
    posefully miss represented her age to me though! She
    said she was 26 when in truth she is 28!! Saw it in a
    People's Mag. story. I thought she looked Older. An Op-
    pha makeover in order?? (I mean. I can put up with the
    "cracker" thing. but this?)

    My sweet Daughter started school this week for her M.A.
    and she's very happy and excited. Hope's to paint her
    kitchen this weekend so that all will be comfortable,
    clean and in place for when she begins to settle in with
    school matters and work!

    Rocky and I are still "fine tuning" our newest comedy
    routine! Won't be ready for Comedy Central for another
    couple of weeks. Not much challenge there I would think.
    We are stuffing the laughter in the cans as we speak!

    Sweetie, again I admire your attitude and continued cour-
    age in all that you have endured! You and Anne especal-
    ly are real troopers! Talk to ya' all later!

    MRDAD



    [This Message was Edited on 09/22/2006]
  6. Marta608

    Marta608 Member

    Good early afternoon!

    Just a quick note here to tell you all that our dear Buddhist friend has been banned from the board. In fact I may be banned for telling you. I hope not. Most of us try very hard from the depths of pain and exaustion to do what's expected of us here. We depend strongly, even more so than on other types of message boards, for the support we find among the friendships we form and do worry about them when no one else seems to. This has become a very important part of many lives and as such deserves respect on both sides of the "screen".

    I'm very sad about this and hope my sadness or my reporting to her friends isn't breaking any rules. She is concerned that her absence might be upsetting if the reason for it isn't known since people have worried in the past knowing the extent of her illness. Without speaking for her which I don't believe in doing for anyone, I will say that she is currently still very sick but, as ever, strong in spirit and love. This peaceful soul will be sadly missed here.

    Marta
  7. Cromwell

    Cromwell New Member

    I could not imagine why that would be so. She really needed the support here and I never saw a mean thing in her. Buddhists are just naturally kind people.

    If only people got a suspension for a week first maybe unless they were really awful or telling packs of lies. It is such a blow to those who enjoyed the posts really, not just the missing person.

    When one is so sick, it is hard to separate what one is supposed to be doing due to brain fog and pain.

    Is there an appeals process at all? Who would know. How did you find out?

    Gosh that is too bad. I will miss her/him greatly.

    Love Anne

  8. Marta608

    Marta608 Member

    Me again. Thanks, Anne, for your reply. I couldn't nap worrying that someone (me??) would get banned because of my report. I want to urge everyone not to discuss this situation but rather treat it as information only. I don't pretend to understand any of this, I only want to prevent worry, as does she.

    Many thanks to you all. You're worthy pals.

    As our friend would say -

    With metta, (If I only knew what I was saying! Must be good knowing the source.)

    Marta
  9. 1sweetie

    1sweetie New Member

    Thank you for sharing. I so appreciate the information and my heart aches. Needless to say I do not understand nor can I question I guess.

    We just post what is on our hearts and to be honest, I can't remember the rules. I have read them twice recently. I understand that we need to be courteous and respectful of others, to not be argumentative, and to not give or ask for personal information. Do you know if you can get or give personal info in a private chat room? I will read the rules again. We all have such cogntive problems that I forget what I read any way.

    I can not express to you the depth of how I feel. If you are able please convey my love and appreciation for all that the individual has done for me and for so many more. This is a board of compassion and that is what I received. I do not know what else to say...I feel pain and that would be pain from the heart not body.

    This was a beautiful day today until now. I was going to share how lovely the weather is here. Nice warm days and slightly cool nights with beautiful blue skies have finally arrived.

    I am normally housebound except for appointments. I live in a rural area and am approximately 12 miles from civilization but there is a nice garden shop about 6 miles from me. I drove there and found some beautiful pansies and violas. They are special to me. Each one has a different face and they feel like they have a personality. I am hoping that I can do a container garden and am really hoping that my son will plant a few close to my large window so that I can see them all winter. They bring me peace. At the moment I need something peaceful.

    Thank you for sharing with me. I would not have understood(as if I do now).

    ((((Hugs & pass them if possible)))
  10. Marta608

    Marta608 Member

    Will pass all on! Thank you.

    I love pansies. My mother used to sing me a silly little song that I now sing to my granddaughters. It goes like this:

    'Tis a dear little face in a pansy
    It is so happy all day
    It's face is the same
    In the rain and the shine
    Don't you think
    that it looks like mine?!

    You really need the vocal to appreciate it best although I may be doing you a favor by not being able to provide it.

    Best to you,
    Marta
  11. 1sweetie

    1sweetie New Member

    How kind and smart you are for taking care of your disabled sister. I'm very concerned about the future of my SIL. No one has ever considered her future financial needs. Well... it was considered but it will not happen as planned. The family is greatly dysfunctional.

    My so called "normal" SIL's deleted my FIL of most of his cash funds before I found that and the real estate was divided by the 3 "normal" children and the money was to be used for the special SIL. It will not happen. My husband and I are trying to figure out what to do. We are hoping that they will settle for a portion of the money now and sell the real estate to us and let us take care of her needs. The other sisters have not even seen her in 6 months. Wow, I just unloaded a bunch of "dirty laundry" but that was a small pile there is a mountain. Families can be complicated can't they? Real families and board families are similar. We just don't understand everything that we want too.

    Personally, I believe Fredericiak may be too old for you now that the truth has been exposed and deception too??? You do seem like a forgiving man but to find out about your woman in the tabloids is troubling. Also if you want to continue this relationship, may I suggest that your upgrade your restaurants. Save I Hop until you have been seeing each other longer. You need lessons on romance.

    I actually can see you and Rocky as a comedy team. I would pay. Then you could upgrade your dates with Fredericka.

    Did you read Marta's post? Do you understand?
  12. Lolalee

    Lolalee New Member

    Hi Sweetie, I was thinking about you this morning and was going to post an "APB" because I haven't see your name on the board recently. Truth be told, I haven't been too active myself, responding only to those posts that jump out at me and feeling too poorly to initiate a thread.

    How are you? How is your Mom? This week I've had a really rough Monday and Tuesday and I'm still sinking....soooo exhausted today from nothing more than Neuroligist follow up appt on Monday and lumbar spine MRI, nerve conduction test on calves and feet and lab work on Tuesday. It's beautiful outstide, but all I want to do is stay in bed. Hope you're doing better.

    Lolalee
  13. Cromwell

    Cromwell New Member

    Hi, sorry you are having those tests ooo not nice but hope they show something.

    Did you read that my new doctor found out I have glaucoma not caused by pressure but by some "other" nerve disorder. I tell you I did NOT have this last year and all year my neuro has been lax about following through on tests etc.

    It never rains but it pours!

    1sweetie. Again, this family greed thing, what IS it with people. Not only that, but in my dh's family, one daughter is wealthy and her dh inherited recently. They totally ignore that we are trying to survive on $23,000 pa tops for family of three, two of whom are disabled. Plus his mom and dad have the estate divided equally between the three kids, knowing that daughter needs nothing and the other daughter probably could do with less. It seems thoughtless really plus we are the ones who have always taken care of the parents when needed.

    But that is family I suppose. I just hope mrdad gets what that sister needs plus what about him? Why would they put HIM through this knowing he is disabled?

    Have you read the Prickles post? She is safely in Germany. What courage she has-she is now blonde.

    Do you know mrdad invited me for dinner once and then cancelled last minute I think when he discovered I was "older". MMM just because I was born in the last millenium.....

    We are just lighting a new gas fire we installed. This is so we can avoid using the furnace this winter. I am so proud of the fireplace we built comprising a $16 shelf and the rest scrap wood, it looks really super. I also managed to buy some lovely tile for 25c each I still have to put as a surround, but even now it looks like it cost about $500. Trash to treasure!!!

    Feel a little blah tonight, maybe because it grayed over this evening. New Moon for the equinox (tomorrow?) and I think a total sun eclipse visible in parts of USA and Mexico.

    Love Anne
  14. 1sweetie

    1sweetie New Member

    Lolalee..so happy to hear from you. I posted this thread earlier and was going to do an APB on you too but I BOUGHT PANSIES instead. They make me happy and it made me happy that I was able to go also. I enjoyed Marta's poem about pansies. They are so special. We actually used them in my daughter's wedding. It took a great deal of coordination between her dad, me, her, and the florist to get it "perfect" for her. The wedding was in the end of May and her Dad grew beautiful pots for us since the previous fall. We developed this love of pansies from my ex husband's deceased Mother. She would have been happy. Pansies are not easy to use in that type of setting but it worked beautifully and we felt that it helped include her Dad's Mom in the ceremony.

    When I came back, I checked the post and became somewhat depressed. I wish I understood at least part of why there are so many things that happen to us that we can not control. I'm tired of losing people in my life that I like and care about.

    Thanks for remembering my Mom and more importantly thanks for the prayers. She is doing much better than you would expect. Her birthday is Monday. Each one is important now...they always should be. Every one's birthday should be their special day(must be my inner child).

    Have you found out anymore about your legs? I'm not impressed with your neurologist either. Why is he not concerned if you have abnormal test results? It sounds like you are going to my doctor. Are you still having to use a chair?

    I think we were both having an energy crash. You went through so much. I know we are both trying to watch our energy envelope but it is quite hard to do when you have so many appointments. I have to be careful with the computer use also. I splurged last week and used my computer time to purchase some items that I have been wanting and needing. It was exhausting. I did buy some excellent CD's for relaxation and also some that were not quite so good.

    Music helps me so much. It helps with relaxation, pain, and sleep. It is a new discovery for me.

    Do any of the rest of you use music as part of your health plan?


    carla-nl...Sorry that you do not have much money in your pot. Loved your disclaimer. Maybe we could get Mrdad and Rocky to donate their proceeds from the Comedy Club to the pot. I wish we did have enough money to make a difference for research and to help people get the medical care and medicines that they need to feel the best they can. That is why I'm so involved with all the Advocacy issues... every little bit counts



    Anne & mrdad: Have either of you tried massages for your hands? It has been a miracle for me. I had such problems with both my hands and feet. I even purchased a hot wax machine and it felt so good and made your hands and feet soft as it helped with the pain in those body parts. I got a unit large enough so that I could dip my elbows and knees in it. If you can't go to a massage therapist, you can learn to do some of the techniques yourself. Also just run warm water and Epsom salts in a pan. It feels so good. Another very good and natural item that will take the soreness from your hands and feet is a gel with Arnica Montana. It is easy to find and it's a miracle. Please give it a try.

    Actually I have learned to do a lot of the hand massage work on myself. If you are lucky get a family member to help and mrdad has Fredericka. My son has a talent for it.



    mrdad: Can't believed I've typed so much...bet you can't either. I finally found the post on your thread for Prickles.

    You sound like a great Dad and so proud of your daughter with good reason. It sounds like you gave them a good start in life and that they are doing a great job.


    It is was nice chatting with everyone. Hope everyone has a good evening.

    PEACE to my friends!

    Later

  15. Marta608

    Marta608 Member

    Thank you all for the kind thought about our friend. They are much appreciated.

    Melissa, all sorts of fingers are crossed for you, as well as all of you who are having trials now. What doesn't kill us makes us stronger, as they say, whoever they is.

    Time for the Rock to come in and lighten things up, isn't it? Or MrDad? I'll be back to check on them in the morning. I'm an early bird at both ends of the day.

    Marta

  16. 1sweetie

    1sweetie New Member

    I'm so happy that you found this thread. It is with a heavy heart though that I respond. I totaly understand the connection you were speaking about.

    I did not remember that you had sjogern's. They have mentioned it to me twice due because of the dry eyes and swallowing difficulties. Once my dentist mentioned it to me because my mouth was dry and I was suddenly getting cavities. The ophamologist said told me that most people with CFS/FM had problems with their eyes. My vision changes constantly. I have never been tested or is there a test?

    It is exciting that you have the chance to get into a clinical trial. It would be great to find something to help yourself and to help others at the same time. My doctor has asked if I wanted to do an experimental program. It would be daily IV fluid therapy. I was excited when they told me how it affected one's energy but then I found that it was a daily infusion and if it was stopped, I would be in the same situation that I am in now. The thoughts of a portacath and the risk of infection did not sound very attractive to me.

    I also learned from your post that your daughter lives in NC. That is where I live. What part of the state does she reside?

    I am getting so tired that I have to get off of this computer now. I'm glad we found each other again. You are very kind.

  17. mrdad

    mrdad New Member

    Yea, there is an old Irish saying. "You can pick your
    friends, God gave you your relatives". Boy there is
    some real truth in that statement!

    I've all the rest of my family behind me on this one.
    My Brother-in- law was making his move in my Older Bro.
    and Sister-in-law's house within an hour of my Bro. fun-
    eral! That Bro. died suddenly at which time I was to as-
    sume his place under my diabled Sister's Will. BIL usurped
    me, had my cognitively and physically diasabled Sister
    change her will and set up a Living Trust designating
    himself and my other Sister as the beneficiaries!

    He has gained control now of all my disabled Sisters as-
    sets for the moment and perhaps for ever. I have done hrs.
    and hrs. of research on Penal Code and Probate Law. We
    siblings were "remainderments" and my disabled was in the
    Family House in "Living Estate". When we sold the house,
    the proceeds we allowed this Sister to use as security
    for the rest of her life. If they continue to control
    my disabled Sister's assets, do you think she would be
    taken care of by my Brother-in-law in the event of his
    wife's death. I dought it.

    Hope to present my case to the D.A. after making a Police
    report. My disabled Sister has the cognitive ablility of
    a 7 to 10 year old. I'm not afraid at all to have her sit
    before a Jury and evaluate whether she has the mental ca-
    pacity to ward off any "undue influence". Difficulty here
    is that the law in this area is vague and fairly ill=defined
    Yet if I can't win on testimony and documented evidence
    compiled, I would not suggest anyone attempt to rectify a sim-
    ilar problem. This has to be a classic example of indes-
    crectionary use and exploitation of one's relationship to
    the exploited!

    I'm pursueing both a criminal and civil cases concurrently
    and hope to win one or the other if not both. Anywho,
    that's what "I be doin'" kids! Dish me some luck!

    I'll catch up with all of ya tomorrow. You are ALL among
    my warmest and dearest friends!

    MYDAD
    [This Message was Edited on 09/22/2006]
  18. Marta608

    Marta608 Member

    A quick question for you or anyone who knows: How do you pronounce Sjogren's? I might as well ask my doctor about it since I fit all the criteria. It would be nice to be able to tell her what I want to be tested for instead of handing her a note.

    All the emotional turmoil I've read here (and on the rest of the board) reminds me of a quote I heard from a mortician (see what joy I bring to your midst??). He said that it wasn't what people die from that surprised him but rather what they live with. Good, I thought.

    Meanwhile, on a cheery note, I'm looking forward to my youngest son coming from California for a visit in two weeks. Not his entire family since his wife must work and the children are in school, just him. I told him I didn't want to do normal things; I just want to sit on the curb and wait!

    Peace to you all!

    Marta
    [This Message was Edited on 09/23/2006]
  19. Lolalee

    Lolalee New Member

    Hi Anne, thanks so much for your note. It's a pain having all these tests, isn't it. I find myself hoping that the tests will show something..some kind of proof that validates why I'm feeling this sick. The latest batch of tests are ok, per the nurse who called me yesterday. However, I wouldn't be surprised if I find some abnormality when I get my copies of the results. That has been the trend.

    I'm sorry about your glaucoma. That's gotta be a little scary. It seems that it might have been caught sooner if your neuro had been pro-active. This is what I'm noticing about my neuro. All the abnormalities that are showing up on the various tests, he is just brushing off as nothing to worry about. Well, I'm not going to worry about it, but I'm not going to ignore it either.

    Happy Saturday...hope it's a good one.

    Lolalee
  20. Lolalee

    Lolalee New Member

    Hi sweetie, I'm glad you bought the pansies. I love those flowers. I had a little pansy garden patch last year. It was such fun looking at those happy faces. I never thought of putting them in a window box. I've got a couple of window boxes that are starting to look pretty sad, but I think it might be too soon for pansies since they like the cooler weather

    Yes, I would imagine that having pansies in a wedding setting might be a challenge since it is not the "typical" wedding flower. But I bet it was beautiful...how could it not be...all those magnificent colors.

    So glad to hear your mom is doing pretty well. Monday is my 2nd grandson's birthday. Evan will be 6. He's the cutie sitting next to me in my profile pic.

    Re my health problems..still using walker or cane or wheelchair when I leave the house (which isn't often). My latest batch of tests are ok per nurse, but I will have to wait to receive the copies so I can see how "ok" they are. My neurologist seemed more concerned at the last vist this past Monday. I guess seeing me in a wheelchair made him take me a bit more seriously. Time will tell. Meanwhile, I'm just putting on a happy face, listening to my William Collinge CDs for "Recovering for CFS" for breathing, imagery and relaxation. I always feel a surge of energy or a peace feeling of relaxation afterwards.

    Yes, I, too, find that music affects my mood. I know what you mean about the computer draining your energy. I try to limit my time...I've already gone over my allotted time today.

    Take good care and get plenty of rest.

    Lolalee