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Everything posted by ShawMJ

  1. Hi everyone a week ago today I went to a surprise birthday party for my 85 year old aunt.I was greeted by one of my cousin's wife who asked me to sit by her.I wondered why and she told me her niece had just been diagnosed with sd and she wanted whatever info I could give her about the disease.I asked her if she knew what type and she said "NO'.I then went into Crest and Diffuse and gave her what the Crest meant and then started just asking her questions about her niece.She said that she's had it for 2 years now and was just finding out what she had.Sound Familiar? She did say that her face is not as tight as it was and that the dr.had her on prednisone but she didn't know the dosage.I told her all I knew and she was grateful,I told her that its scary and to tell her to take it one day at a time.Whoever the doctors was gave her the old "10 year thing".I told her that was said in the past and that its not like that now as they know more etc than they did those years back.Can't believe theres some still living in the 'dark ages".I'm going to give her the address to this site as I know it would help her as it has helped me.She thanked me a lot and was going to call her niece when she got home.I told her things she didn't know and she knew her niece didn't either,guess they didn't give her too much info.I hoped I helped and wish I would have known someone I could have talked to,but I found this and it made a huge difference.Hope all of you are doing okay,hang in there everyone maybe some day there WILL be a light at the end of the tunnel! In the meantime SMILE. Mary-La.
  2. ShawMJ

    Dr.visit,unhappy With News

    Thanks so much all of you for your nice replies.I know this is the one place I can come where everyone understands the problems and we help each other cope.I will continue my 'one day at a time' thing thats how I cope besides having my friends here to help.Hope all of you are well and have a nice weekend.Smiles Mary
  3. Hello everyone its been a while since I posted.Haven't felt at all like doing much of anything.Major stomach problems.Anyway a lot of you know that my hubby is on Aricept for memory problems.Today we both had appointments same dr.Now of all the news I hate to hear, he has diabetes.I am devastated.He showed no signs although a few times last year he was 'borderline'.Well he's done crossed that border! Starts taking meds in the morning,hospital is arranging a diabetics class for us to attend,At that time he will be shown how to use his meter and how often and will be given one that time as well.We stopped at store and bought fresh fruits and some vegetables as well.Tomorrow is 'clean the pantry day'.All sweets will be given to grandkids! Cold drinks are going as well. So please keep us in your nice thoughts.As for me - my sed rate had been hanging around at a good 8-10.Well today my internist said 'Mary,your sed rate is 131 ! I almost fell.He asked me how I had been feeling and I told him of the changed bowel movements (none) unless I take something and then it doesn't work and I wind up with an enema.The whole episode turns into a uc attack.I was very ill MONDAY.His exam was so painful and he wasn't rough its just that I hurt so much all over even this hurts! So now I have to have a barium enema,pft,bone density and various x-rays.The only good thing was I actually lost 6 pounds.Yeah! We will do a colonoscopy later as they have so many scheduled I wouldn't be getting one for a while so I brought home my jug of yucky stuff I will have to mix and drink! Theres no way I will be able to drink all that junk its too gross tasting! I will be doing all that at the end of May have to do it on hubby's days off.The dr said that even without the tests he knew the sd is doing a "major job'on my intestines.I started keeping a journal of my bathroom vists and how I would take a laxative,wind up with an enema and be really sick.Its been doing it since last year so hopefully I will soon know whats what.So sorry this was so long,its just that I needed to get this off my chest how scared I am with my husbands diagnosis,etc.He's always been there for me so now its for each other I take care of him as well as he takes care of me.We will get through this as we have all our other challenges.Hugs and smiles to all,and a smile even for MYSELF Mary- La.
  4. ShawMJ

    Colonoscopy And Upper G.i. Scope

    I had a sigmoidoscopy in the early 1980's and I had nothing I went cold turkey,it was not a pleasant experience thats for sure! The dr.later told me that he'd ordered it but somehow I didn't get it.Thats how my ulcerative colitis was found.To top it off I drove home being very SORE! I had to stop a couple of times but I made it.I can promise you that when I went back for another one a year or so later I had sedation and someone to drive me home.I've had 3 colonoscopies and when I go to the dr.on the 26th I'm sure I will be scheduled one.Not looking forward to the prep that is the worst! I never could eat before them either but could sip on crushed ice as long as it wasn't alot.My husbands sister had an endoscope,colonoscopy and her gall bladder removed all at the same time.That was back in November and she's doing fine.She lost a lot of weight but it was before her tests and surgery,she said she just didn't have an appetite when her stomach was hurting so bad.She's only put back around 3.Anyway I don't like to have anything done that I can feel.Just hit me on the head with a hammer if nothing else LoL.Hope all are well,its 40 something degrees here in La.and thats very cold for us.I feel it too.The best to all. Smiles-Mary-La.
  5. ShawMJ

    I'm Back

    Hi everyone I haven't been on here lately because my 'puter decided I should give it a rest! No seriously it was a minor problem which thankfully my daughter took care of today.I have missed reading all the messages and Barbs blogs which I love to read! On the health front I join all of you with the fatigue as I have had it since last year and it just keeps hanging on! Trouble with the intestinal tract as I can no longer go to the bathroom with out taking something and most of time it winds up turning into a uc attack which I can certainly do without.I have an appointment on the 26th so will be bringing up all my troubles.But on the whole as I say it could always be worse so I take it a day at a time as I always have and try to think good thoughts.I hope all of you are hanging in as well.Smiles and good thoughts to all. Mary-La.
  6. ShawMJ

    I'm New Here...

    Hope,I'm going to join the rest in telling you that the timeline is so OUTDATED,why if that was the case I'd be gone this year as I have had scleroderma for 10 years now and I am still very much here and plan to be for a lot more.I have 2 daughters older than you but ten years ago when I was diagnosed they got online and found out all they could about this disease so did my two sons.I have a very loving husband and children and grandchildren and I of course have my bad days and not so bad days but I take them one at a time and do what I can do and have quit worrying about what I can not do.Your mom is lucky to have a caring daughter like you and your dad too.Read all the links that Heidi and the rest of the group gave you they're packed with lots of good information! And do come here as often as you need to,as you will find that we all understand what you're going through and can maybe help.Please don't worry about the time they gave yu that was really wrong of them.Keep your chin up and my favorite saying is ----Smile. Mary-La.
  7. ShawMJ

    Radio Interview

    Hey Barbs that is some news I wish you the best with your interview and glad that you're helping people understand about these things.Back in 1998 when I was first diagnosed I did a TV interview,and I think it came out okay but I was so nervous! It was a young woman that did the interview and she was really pleasant about the whole thing.However I wouldn't do it again.Once was enough! It did do some good though as I had so many people tell me they had never heard of it until they saw the interview.So I guess it did help enlighten some people.I hope you're doing well and that the geese are behaving.Did the one from across ever come back or is it still 'missing in action'? Take care of yourself and keep on with the blogs they're really fun to read.Smiles and hugs Mary-La.
  8. ShawMJ

    My Three Week Nightmare

    Hi Janey and welcome back.I've been wondering where you were and am so sorry that you went through such an ordeal! I'll say like everyone else thankfully we have good husbands to take care of us ,yet I know he was so worried about you,my husband gets this 'lost'look on his face.I'm also happy that you have a good support system with family and friends.Do please take care of yourself.son't push yourself and you will get well.Your attitude speaks volumes for you.Once again so glad you're back.Take care and maybe now that you're home you can SMILE! Hugs,Mary-La.
  9. ShawMJ

    Helps For Daily Tasks

    Hi Sakar,I saw those in a little magazine, thats where I got my grabber,although now you can get them at medical supply stores as well.Perhaps you could try there as they have a lot of stuff like that as diabetics need things like that as well.If I get a magazine I will let you know about it.Hugs and smiles- Mary-La.
  10. ShawMJ

    Helps For Daily Tasks

    Hi Ladies,one thing I would be lost without is my 'grabber'I know you' ll have probably seen them on TV or magazines.It has the little scoop at the bottom that picks up things for you.Especialy good when reaching for something.it picks up good too I have even picked up a small piece of aluminum wrapper from gum.If it hurts to use then maybe someone else in the house can use it to get the things you need,I find my husband using it quie often to pick up stuff.They cost about $10.00.I often wonder what I did before I had it.I've also seen a thing-a-ma-jig that helps you pull up your socks and I think I'm going to get one of those as I could use and so could my hubby.You can find work gloves with the little 'dots' on them I have a lot of those around as well.My fingers aren't curled or anything like that but they are very painful as the internist says I have arthritis in them now as well as my knees.I also wear shoes with no backs just the sliding on kind so I've had to buy new shoes.Thats so funny we all love shoes don't we but having to wear a certain kind makes it no more fun! I have a pair now in all the basic colors.Also the little cozys that you put around your cola cans help the hands very much and aren't expensive either.Well this IS a great thread and if I think of anything I will tell you'll about it. Smiles-Mary-La.
  11. ShawMJ

    Something To Smile About

    Thanks all of you for your sweet replies.Yes its great being a grandparent.Its sort of like the joke we all probably heard,"If I had known grandkids would have been this much fun I would have had them first LOL.I hope to live toa ripe old age to enjoy watching them all grow up.I've already had the pleasure of watching our first grandchild grow up she's 19 and a super little lady.Is going to college on a full scholarship,works and still is maintaining her great grades.Yep I'm proud ! She was there also and it was good to see her as she doesn't live at home with her mom anymore but has her own place where she goes to college.It was her little sister that had the birthday.Well take care everyone here in Louisiana we're having cold weather that we're not used to,its usually hot one day cool the next but for the past week,its been wet and COLD! And we all know how cold makes us feel! I'm staying warm though.Smile all of you. Hugs Mary
  12. Yeserday I went to my 6 year old grandaughters birthday party.It was like the holidays all over again for her.I didn't do much but helped my oldest son keep his 2 little boys from going to the other parties.It was at Gattis Pizza.It was also a chance for my oldest son and youngest son to see each other as they both work offshore here in the Gulf of Mexico.My youngest son has a baby girl that just turned a month old on the 18th,.They didn't bring her but he brought his little 21 month old.She didn't have to be told to eat pizza and cake she did quite well all by herself.Then she and her 21 month old cousin started hugging each other it was just too cute.Came home and had my second uc attack in 3 days but managed to get through it ok.Today my youngest son came by and this time they had the new baby he put her in my arms and I gave her a bottle that she promptly finished,I burped her and then started talking to her and she gives me the biggest prettiest little baby smile.I thought to myself that no matter how bad I might feel that is one thing that can surely make one feel as theres hope for all of us.It was just so perfect.After that she fell asleep in my arms! I gave her a big old kiss on her little bald head.she had on the clothes we gave her for the holidays.I know this has nothing to do with our usual topic but just wanted all you other grannies to read this and know just what I'm talking about.Theres just something about a baby's smile that says alls right with the world.I hope all of you are doing okay as we can be.And of course what I always say SMILE--- Mary-La.
  13. ShawMJ

    Losing Weight

    I'm a diffuse one too.I wish I could say I'd lost weight,I did when I was in the stages 0f being diagnosed.Went down to 143 pounds from 187.That was then but now like some of you I weigh more than I ever in my life thought I would ever weigh because I was always so much smaller than this.Pain is also what keeps me from exercising and fatigue too,who wants to exercise when all they want to do is sleep? And thats not always happening,I stay awake many nights including night before last.Pain keeps one from doing what they knw they should be doing,I'm afraid my internist will chew me out when I see him but he can just chew away its not him thats hurting and tired! I really do want to lose it though.I also have no willpower as some do.Keep telling myself I will try again but then here comes the pain and fatigue and I'm back to square one.Anyway maybe some day I will lose it.its good to know I'm not the only one.Smiles and hugs,Mary-La.
  14. ShawMJ


    I hope that all of you have a happy new year and I also hope that maybe this year someone MIGHT find a cure for us.Wouldn't that just make the year special?If not maybe more and better medicines for us without all those old side effects.I just plan to take it a day at a time like I have been doing.We ended 2006 by seeing something in our yard we don't see every day.My husband walked out on the porch came back in really fast and told me there was a BABY BOBCAT in our front yard,By the time I got out there it had gone under the house but I went to my laundry room and looked out the window there and it came out from under the house.SO Cute with the little bobtail and tufts on its little ears.Not very big either.It wound up going behind our old garange and then we didn't see it anymore.My husband had to get on top of the house because we had violent storms the night before and one of our turbines had come off.He hollered at me and told me to look south,there were 2 MORE bobcats just walking around with the cattle.We had to leave but could hear them crying for their mother my husband said once she hears them she will come meet them.Didn't see them today so I hope all is well with them,hope their mom is okay as they are too young to fend for them selves.If they're that close to our house I will really have to watch my teacup chichuachua as she would make a good meal for the mom and so would our other little mixed breed dog.I'm just glad we got to see that we have never seen small ones before,it was a sight I won't forget,just hope the mom is okay.I'm sorry this was so long but I thought it would be cute to share with you'll.Hope all are doing okay as you can.Have a great 2007.SMILES -Mary-La.
  15. Hi Heidi and evryone who knows me,my baby granddaughter was born this morning (18th) at 11:10 am.She weighed in at 7 lbs.3 ozs,and is 21 inches long.She looks just like her 21 month old 'big sister'Brooke.We are proud of course and she will share December birthdays with a lot of relatives on both sides,her aunt is the 15th.My husband is Thursday the 21 st and her other grandfather on the 25th.Plus today was Brooke's uncle's birthday.Brooke really loved her baby sister and started crying for 'baby,baby'when the nurse came to get the baby so they let her and her other granny walk to the nursery.I held her for a little while but with the hurting arms couldn't hold her long.Hubby held her a LONG time.I am so glad its all over and she's here.I don't know if my son will be able to stay home for the holidays he may have to go back to work.I won't gripe though I'm just glad that he is working when there are so many that arent.Well I hope all of you are feeling pretty good,and are ready for the coming days.I am and so glad to be all done.Take care everyone and big smiles.Mary-La.
  16. ShawMJ

    New Granddaughter Has Arrived

    Hi All,the baby's name is Kourtney Nicole.I was supposed to put it on here last night but forgot.She was actually born on her due date too! Thats news there too.My son said they all went home today and all is well.The baby only woke up twice last night and didn't cry much when she did.So now its just the wait to see if his company will let him stay home.I sure hope so as I've gotten used to having them all here for the festivities.Its a full house with the wives husbands all the grandchildren adds up to 21 in all but I love it.Tired when its over but its a good tired.Hope all are well its hot here in La.in the 70's but supposed to turn cold in a couple of days.Hope its not too cold as I know I feel bad enough before it gets here and don't like it when its so cold but then I don't like the heat either! I love the spring and the fall best of all.Well gotta go my tummy wants a snack lol.Smiles to all and thanks for all the congrats.Mary-La.
  17. ShawMJ

    "i'm So Wiped Out"

    Oh I know just how you feel with the grandchildren.Its such a pleasure to have them yet when they're gone its like "whew.didn't know if I could make it throught the day.Especially for Monday there will be most of the grandchildren and they range in age from 19 to exactly one that was born today! There are a 5 year old 3 year old and 2 that are both 21 months old.Lots of 'kiddie noise'.Then of course the grownups start remembering the things they did growing up and we all laugh until we almost cry.Its a great time though and I love it although it does wipe me out! Theres always the next day or that night and I can REST.Take care of yourself and enjoy.Mary-La.
  18. ShawMJ

    Getting To Know You - Archives

    Hi I live in south La.I think I'm probably the oldest on here as I am 61.Was diagnosed with diffuse sd in 1998,also have had ulcerative colitis for 24 years now.I also have osteoporosis,sjrogens,mild raynauds,hiatal hernia,herniated disc,peripheral neuropathy and other stuff.Take lots of meds.I'm a grandmother of 2 boys,and 6 girls,but we're waiting for another girl any day now.It shows on here that I'm a newbie but I'm not have been around since 2002.Have 2 boys and 2 girls,husband of 42 years that I'd be lost without especially now,and he is on Aricept for dementia.He does work however and its helped him alot.I don't know what I'd do without him as many days he has to do everything for me.We also have pets,3 cats 2 dogs (small ones) a teacup chihuaha( spelling) and a little mixed breed one.I have just finished wrapping all the grandkids gifts for the holiday.Can't wait for the new baby to get here her name will be Kourtney Nicole.I try to stay positive about my diseases and know there are pople worse off than I am.Right now I'm fighting fatigue and it seems like I've been fighting it forever.Took our flu shots Monday of last week.Hoping to do something about my weight gain after the new year,I want to indulge in the holiday foods and goodies before I have to give it up.Well thats my little dialogue about myself,its interesting to read about everyone,where you're from etc,I am enjoying this.Take care everyone and my favorite saying is to SMILE. Mary-La.
  19. ShawMJ

    Lowered Prednison From 40mg To 20mgs

    I think there was another thread about prednisone not long ago last week maybe.Anyway of all the side effects it has it can also cause osteoporosis which is what it did to me as I was on since 1997 when they were trying to diagnose my illness.I always had the bone density tests and one year it was ostopenia and I knew that wasn't good that I was just a jump away from osteoporosis.The following bone density confirmed it and had another one not long ago and am now taking Fosamax.Have to be very careful not to fall etc as once you have it fractures and breaks are common,so far I haven't had nothing thankfully.Anyway thats ANOTHER reason to be weaned off of it if possible.I weaned myself off of them gradually as I thought the doctors.would do and didn't have any problems.Still keep them on hand though in case I have a flare I know they're good for the inflammation. Mary-La.
  20. ShawMJ

    Arghhhhhhhh Prednisone Again!

    Hi ,I too know what yu mean about not wanting to be on the prednisone,I was on it for years.Like you the last time this past year I was only on 5 mgs but my internist told me to tell my rheumatologist that if it wasn't takign care of the inflammation I should be taken off.He didn't want to hear of it so for a number of reasons I quit seeing him anyway and weaned myself off of it.I was very careful and suffered no side effects.I'm so glad I;m no longer on it.I had been on it since 1998! Have gained a LOT of weight on it but other meds have that side effect as well although I can't think right now what they are.I still have them in case of a bad flare I know they help.The best of luck to you with everything else you're having problems with.Take care and smile.Mary