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Everything posted by ShawMJ

  1. ShawMJ

    Your First Symptoms

    My first symptoms of all things was itchy burning feet.Then they swelled up and it traveled up to my legs.Then I started having all over pain that was horrible.My hair was also falling out by the brushfuls all I had to to was just pass my hand in my hair and gobs of it would come out! Then the arms started the same thing as my legs and feet did.Only now my skin was so shiny and tight it felt like a vise! I was also losing weight rapidly,and I was very weak! The doctors did a biopsy in the deep muscle tissue of my right leg and to this day even with a scar there it still hurts.I also had acid reflux really bad and down the road a lot of other things happened but its 10 years now and I am thankful that its no worse.I deal with the pain and take one day at a time.I hope you can do the same as a good attitude makes all the difference in the world.I have always believed that it could always be worse and one doesn't have to look far to see that.Love hugs and SMILES-Mary-La.
  2. ShawMJ

    Peripheral Neuropathy?

    Hi I also have peripheral neuropathy,mine was diagnosed when I had a muscle biopsy done when they were trying to find out what I had 10 years ago thats how I found out.My legs burn a lot and are painful and didn't use to trip before but I do now.I also don't feel things we have to watch for mosquito bites when I'm outside because they can be biting me and I won't have any idea of it.Anyway that was my way of discovering it.Yes many people with scleroderma usually do develop it.Take care- Kittyears.
  3. ShawMJ

    I'm Cold

    Barbs if you want to be warm and not have to worry about the raynauds then you should come to La,where its always hot and most of the time in summer don't know WHAT a breeze is unless we get a hurricane and thats a lot more that breezes! I really did like your poem they're always so good and funny.Take care.Love hugs and smiles for all.Mary-La.
  4. ShawMJ

    Getting To Know You - Archives

    Well Hi all I'm from southwest La.you know the home of Hurricanes Katrina and Rita ,we're about 2 hours from New Orleans,but our Huricane Rita was Sept.24th and we didn't get all the publicity that New Orleans did.I have a husband of 44 years 4 grown children and 9 grandchildren.I love La.its the only home I've ever known we have wonderful food here,great people and I'm proud to say that I can still speak Cajun French.Just sorry I didn't pass it on to my kids.Its so nice to see where we're all from.I love this place! Mary-La.
  5. ShawMJ

    Heart monitor

    Hi Barbs,I'm not glad that you're hooked up to the monitor but it may just tell them what they needd to know.Picture this my 7 year old grandaughter is also wearing a holter monitor as she has been having fast heartbeats,getting clammy skin nausea and almost passing out.Can you imagine the questions she had to answer at school?They ran all kinds of tests on her,blood work,mri and a lot of stuff and nothing came up but the pediatric cardiologist said that wasn't normal what was going on with her.Well found out today they removed the monitor and she now has a 'beeper'that they use,she's had two episodes since having it and still nothing shows up! She'll have that 4 MONTHS! Tonight they're all going to ride the 'kiddie rides 'at a carnival,she and her little best friend.I'm really worried and hope theres nothing wrong,the doctor said it could be anxiety attacks.Well I hope thats all it is as that can be dealt with pretty easily.So just one more worry for me.I'm sorry you had to endure all that but it was FUNNY! Aren't our handicapped slots the best thing?I give dirty looks but its to all the young people who think its okay to park there thinking they will only be in the store 'a little while'.That NEVER happens I always think 'what if it were your loved one needing it?Well anyway I would like to wish all you moms and grandmothers like a happy mothers day Sunday.Also hope all are hanging in there one day we just might have a cure!Love and hugs.Mary-La.
  6. Okay I'll try again.I have severe pain the groin area and also'there".Its been going on for awhile and its time I did something about.Being in bed makes it worse but I always try to keep going and not be a couch potato.Its always worse in bed trying too sleep but I will soon see the GYN.You'll take care and hpefully aren't having too much plains.Love and hugs Mary_LA.
  7. ShawMJ

    pain -delicate place

    Hello all and thanks for all the replies.No I couldn't move my appointment up I tried but thats the best they can do.I wanted to also say theres no bleeding,no discharge or odor or anything like that its just bad pain,so I will just keep on taking med pains and hopefully find out soon what this is.I promise to let all of you know when I do.Love and hugs.Mary-La.
  8. ShawMJ

    Family matters

    Hi all and all newbies,I've been out as my 'puter was down and out for the count but its good to be back.For those who remember my hubby has memory problems and they have gottten worse sorry to say but I cope! However his blood sugar is great and for that I'm thankful.I'm trying to get him to walk as we have such nice weather here right now but its not always that he will go! Our oldest daughter had spinal fusion surgery in Houston and when she came home we somehow managed to take care of her,her 7 year old-brought to school,ballet etc.Don't ask me how I did it but when your child is in pain you find strength you didn't know you had.We'd leave on Friday as her husband was off and or grandaughter would come in from LSU-Baton Rouge to help take care of her but she had to leave on Sundays to go back to school so we would go back on Sundays.We did that for 4 weeks until she could finally drive a bit to bring our grandaughter to school and pick her up.Other friends took her to ballet with their little girls.she's wearing a back brace that goes all the way down to her leg and thats also part of the brace.She will still have to wear it when she returns to work at the end of the month.Our oldest son's mom-in-law passed away with cancer and a week later her husband commited suicide.So my poor daughter in law lost both her parents in one fell swoop.Somehow we will all make it through.I have eye appointments and gyn coming up and then my internist.Busy busy and I have to take my nap every day or I can't function.Now I must ask,have any of you experienced pain in the groin,vaginal area?I have terrible pain there and its worse when I go to bed when I attempt to get on my side I feel like a 'rolling of muscle'and it HURTS! Nothing takes it away and its not exactly a place where you can put something on it.Its been going on for a while now and I don't see gyn until next month.Oh well I've put up with pain before and I can again until I find out whats wrong.I just wondered if anyone else has experienced this,Its a delicate question but then who esle would understand surely not anyone I know around here! Thats why I have missed being online so much because I couldn't ask all of you the question thats bothering me.I miss Sherrill I came on here when this site was in its beginning and she answered so many concerns everyone had.Such a dear person to all and I know you'll all miss her as well.I hope that all of you are well and now that I;m back I will be popping in to see how things are going.Hugs to all.Mary-La.
  9. ShawMJ

    Worrysome symptoms

    Barbs my 7 year old grandaughter is having those type of symptoms and wore the holer monitor for a week and all was okay they are now using a beeper and if she has a 'spell'my daughter calls it in and they check and tell her is its okay or whatever.he dad has anxiety attacks so they're trying to figure out if its that or a problem as her little heart just 'races'.She was the one we were bringing to school while staying there to take care of her mom-my daughter.I hope you can find out what your problem it does sound like blood pressure though.Mary
  10. ShawMJ

    Where Is Teri?

    Well I sure wish she would let us know how she is,she was always so uplifting with everone! As for me I had a rheumatologist visit yesterday,I have arthritis in both heels and ankles and thats also the problem with my left wrist also in a big scleroderma (kinda figured that) and so on a 4 day round of prednisone.How lovely,he asked me how it affected me and I told him it makes me bounce off the walls and turns my face and neck really red so we didn't do a week thankfully.My top number on my bp was a little high so I am now taking 1 mg higher of the clonidine I take.He said thats why my sed rate was so high.I have to have a bunch of blood work done later.For once I actually saw him at almost the time of my actual appointment! I usually sit there at least an hour or forty five minutes before I get to go in but yesterday was called after only about 25 minutes boy was I impressed.I was so tired,yesterday as the day before we had gone to my son't house and its about an hour from here but trips just do me in I'm sure you all know exactly what I'm talking about.Being fatigued already and then taking a road trip don't go hand in hand too well.I enjoyed myself and I must say this.My 4 year old grandson did something that reminded me of his daddy when he was little and I told him that and that his daddy used to be 'my little boy',his little lip just curled up and he had tears in his eyes and said "Ma=Ma I'm your little boy,it just broke my heart so I hugged him really big and told him that yes he was my little boy.We grandmas sure have soft spots don't we?So I was already tired from the day before and then yesterday another out of town trip to see the dr.Well this has become WAY TOO LONG so better let eyes rest.I hope all are doing as well as we can be and I really am keepin geveryone who is suffering from the bad weather in my thoughts.Living in a hurricane zone as we are we sympathize.Try to smile if you can.Love Mary-La.
  11. ShawMJ

    Where Is Teri?

    I'm just wondering about Clownie she used to be on here all the time and its been ages since we heard from her.Its been a really LONG time and I'm just curious.Maybe I missed something when I was offlie a few months back but I sure would like to know.If you'll know anything plese let us know as we do miss her.SMILES-Mary-La.
  12. ShawMJ


    Hi Margaret I.m sorry to hear about his IBD,I have it as I have ulcerative colitis I've had it longer than the scleroderma but I do know now that its also a autoimmune disorder.Its put me in the hospital a few times and is not good to have,I hope really hope that he doesn't have too many problems with it.He sure has a lot to contend with and that happens with sd you never know what will come up next.Just stay strong,take it a day at a time and let us know how things are going theres always a bunch of "ears" to listen and try to help.Take care of yourself too.Smiles,Mary-La.
  13. ShawMJ

    For My Mum

    Barbs theres not much that I can say because everyone has already said what I would have.I want you to know that you are in my thoughts and yes finally your beloved mom is at peace.I lost my mom years ago to diabetes and the pain will always be there as theres no one like our mothers.Please take care of yourslef I know thats what your mom would have wanted although she couldn't tell you.Your daughter and hubby and all of you will stay in my thoughts.if you need to talk yu know where I am.Mary
  14. ShawMJ

    Hip Pain - Bought A Cane

    I personally don't know what I would do if I couldn't use the carts in the stores or my cane.I have a brand new one its bright red one of my favorite colors,and where you put your hand is a beautiful parrot.My daughters family went on vacation in Florida and thats what she brought back to me I love it.I do get comments but its about the cane.The other two I have are unique as well they're made of aspen wood that grows in the west.Its the root part that makes my cane.my brother-in-law made them for me.It has our 4 kids names on it 'he burned them into the wood and some of our grandchildrens names.He also put teepees on it and kokapeli the Indian that played the flute if my memory serves me right.They draw attention and people are more interested in where I got them instead of why I use them.So if you find yourself really needing it get it there are lots of things our there to make life easier for us.I also have a 'grabber'and don't know what I'd do without it either! I've had my handicapped placard for a while now too,I no longer drive but still need it for my husband to park as clse to the stores as he can.I wish you the best of luck and feel good too.Smiles Mary-La.
  15. ShawMJ

    Suddenly Without Health Insurance

    Barefut have you heard of PPA on tv its a good place to start you maybe can get some of your drugs free if you qualify.Its worth looking into.I hate that happened to you! Take care and good luck to you in this.Mary-La.
  16. ShawMJ

    Flu Shots

    Hi Helen I also faithfully take the flu shot.I've has the pneumonia and they said it would last 5 years.Never had any problems so will continue to take it.My husband skipped it this year but he is going to take it this year. Mary
  17. ShawMJ


    Hi all went for my scheduled appointment with my internist yesterday and for the most part it was good.My chest x-rays were clear,osteoporosis hasn't worsened,and my blood sugar and cholestereol,triglycerides were all good! Being that I never could do the pft he didn't ask me to repeat it.Trouble is I have to take another barium enema,apparently it wasn't clear enough.This time his nurse told me a couple of tips to use in the colyte- I can put unsweetened kool-aid as long as its not red color as then it would show up looking like blood.She also gave me a paper with some pills to take every four hours with the colyte.I told her I wish someone had done that last time! As for my horrible heel,ankle pain he said it was sd related (duh) but that he prefers I go see my rheumatologist as I don't seem to get any relief from the pain there and everywhere else! Also I had 'terrible red eyes"seriously they were so bloodshot it looked like I was on a hangover.no pain just woke up one day and there it was and thats also sd related he said but I did get an appointment to see a eye dr.in October.Its all gone now all of the redness and watering has stopped just as fast as it started! So I see him again as soon as I do the barium again.I'm happy about all the other results especially the blood sugar as diabetes was how I lost most of my family and I'dhate for both me and my husband to have it.The cholesterol etc too,as two years ago I was taking meds for that and now its good,so that pleased me tremendously.Less medicine to worry about! Well I hope all of you are haning in there day by day I'm looking forward to the weekend and a haircut.Boy the little things that can make us happy! In my case a haircut always makes me feel a bit better.Take care all and SMILE.Mary-La.
  18. ShawMJ

    Back From A U Of Mich Visit

    What good news for you.So glad you could get off the prednisone,on the other hand my internist wants me to talk to my rheumatologist about me getting back on as the heel and ankles are inflamed as are my wrists.I hate thinking of being back on it.I will be keeping your dad and YOU in my thoughts.Please take care of yourself during this time with your dads surgery you know what stress can do.Warm hugs for all .Mary
  19. ShawMJ

    Pure Agony

    Hi Barbs and I still think you're brave although I understand your reasons.I hope all turns out good from now on you have been through the mill thats for sure.I hope you enjoy your days in Crete.Sounds like so much fun.On another note I'm so sorry about your mom and hope thats not what is in my future.My husband is on Aricept for memory loss and now he has type 2 diabetes.I can see where the meds are working for him though,He still works and I think its been good for him as it occupies his mind.I still find myself repeating things that I just said but on the whole its lots better than it was before the meds.I REALLY enjoy your blogs and your sense of humor.I look forward to reading new ones.Glad you will be able to enjoy yourself and I bet you and daughter really had a fun time shopping.Its nice to have good families and lots of support it keeps us going.Enjoy yourselves and let us know when you're back home.I know the geese will miss you LOL.Hugs and smiles.Mary
  20. ShawMJ

    My Disability Parking Placard

    Hi Jen so sorry that happened to you but there are all kinds of people in this world and some just want to make others miserable.I too get so aggravatedwhen trying to find a place to park and there are so many with no placards.My husband does all the driving but he gets upset too.Another thing is the little carts that we use in the superstores that are so BIG! One lady was waiting at the bathroom the other day,saw me coming and asked if I was done with it.I said yes I was but I always bring it to the front and if I feel too bad I go outside with it.My husband was behind me with the full shoping cart and she asked "Why can't I have it now if you're done with it?My husband told her "She's not done with it until we turn it in and thats way over there and she can't walk that distance if you want it then just follow us and you can have it,she gave him a dirty look but followed us.I don't look ill either and I don't want to look that way so I keep my hair,make up etc like I always did.So just don't worry about them they have small minds and if they had to be in our shoes just one time they'd change their tune.I agree with the others you SHOULD write to your paper they don't enforce it where I live either and I wish they would they could sure write lots of tickets! Take care and the best to you.Smile Mary-La.
  21. ShawMJ


    Triggers huh,I think mine was chemicals that I handled when I was working in the enviornmental services at a local casino.Some of it was very strong and burned our eyes throat,etc.We complained enough that they started using some other kinds but I often see those same chemicals in other places as in Superstores.I was under a lot of stress as well.Whatever I will always blame it on that.Mary-La.
  22. ShawMJ

    Choking Anyone?

    Well may as well jump on the 'choking 'wagon,I choke,cough alot too.I have even choked just by turning my head sideways! I don't always have to be eating something for it to happen and I hate it as I've had it so bad that I actually lose my breath and if husband not around I have to find a way to hit myself to get it back and its SCARY! I always have water everywhere I go even to church.Yeah its happened there too so its good to have my water handy! I choke on my own saliva too! I've had a barium swallow and starting coughing choking while they were doing it as I was sideways drinking the stuff out of the plastic cup.Said my esophagus was 'tight".Anyways I think a lot of us have this problem and its the old sd that caused it as well as other problems that crop up and throw us for a loop.I hope all of you are doing okay.I had all my tests done yesterday,barium enema(gross-uncomfortable),bone density chest x-rays and couldn't do the PFT as the nurse said I wasn't doing what she wanted so I told her that was all I could do.They will let me know either for my next visit or maybe sooner.Hugs to all and smiles too.Mary-La.
  23. Heidi I'm at a loss for words and that doesn't happen often.Through the years I have thought of you as one of my good 'cyber friends'we shared grandmother thoughts and doings more than once.I hope whatever the complications are get ironed out well for you.You have been so good on this site and have provided us all with such good information and support.Know that I will miss you as much as all the others who have responded to your post.Take care of yourself and please let us know how you are by being on here once in a while.Kiss and enjoy the grandbabies.Lots of warm hugs and big smiles.Mary-La.
  24. ShawMJ

    The Fun Keeps Coming....

    Hi Sheryl and Sweet my hubby is doing much better and is no longer in such severe pain.I know about bad backs too as I have a herniated disc.Pain in the back is not good when its intense like that.He cut grass today so I know its better thankfully.Hope all are well.Mary
  25. Hope all of you are doing as well as we can with this disease. As for us the fun just keeps coming. Friday my husband wound up in the emergency room with a very painful back. He had complained the day before that it hurt and I had him take a pain pill and I put a patch on it. By Friday morning he could hardly move and every movement made him wince with pain. He refused to let me drive,and don't ask me how in the world he got in the pickup but away we went, avoiding roads we knew would be rough.It turned out to be a lumbar strain. Dr.gave him pain meds, muscle relaxers and said to continue with the heat patches. Its better now and today we went to his first diabetes education meeting and it was very interesting. We have 2 more to go to so I guess I'll know all I need to by the time we're done! Take care all and SMILE.Mary-La