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Everything posted by Penny

  1. Ever have one of those days when You wake up, climb out of bed, brush your teeth, get dressed and head out with a smile only to discover in the car that you forgot to comb your hair and it is a distinct possibility that you left your glasses in the house because the world is blurry? Ever make a dish for your family, something you make all the time, then watch in horror as they make strange faces at the first bite and all of a sudden it hits you that you forgot to put in a main ingredient? I remember one holiday, my mother made her usual pies but forgot to add salt to the pie crust fo
  2. Sandra, I am sorry that *jerk* (the word I want to use there would never survive the trip through the filter) took advantage of your husband's good nature, just remember that what goes around comes around and that sorry individual is burning more bridges than he can afford. There is an old saying 'no good deed goes unpunished', but I think that is not quite right... I think it should actually say 'a good deed is it's own reward and those that take advantage of a kind heart will not go unpunished'.
  3. We all know those certain 'items' that we fought against getting, because to get one meant that we had a problem and we were 'getting by just fine'? I will start the ball rolling with a few of my own- My shower seat! I battled against this one for years because having to sit in the shower seemed like admitting that I could not care for myself. So what if I had to sit down on the shower floor because I was about to fall then wait there to get my strength back... or if I took a bath then had to roll over the edge of the bath to the bathroom floor, flopping down like a landed fish! I w
  4. About the peeve of becoming invisable when you have a disability... People try to teach their children not to stare at people who are 'different' and I think it is more of a habit than a social stigma, but in teaching 'it is not polite to stare' I think that in many minds it has become almost an unwritten law not to look and what it ends up feeling like is not polite but ignoring. I have children stare when I am out and about with my cane (on good days) or my wheelchair and I have done things to actually encourage it! I placed a brightly colored bell on my wheelchair (at first I put i
  5. My pet peeves... I travel alot so end up visiting many different "Rest Stops" along the highway, and it never fails that the only stall in use is the handicapped stall... by someone who is not handicapped! I have actually had someone tell me that they prefer them because it is easier for them to 'hover' over the seat! So... not only do they use the only handicapped stall available but they pee all over it! I have actual need of the handicapped stall and have to carry in my own cleaning supplies to sanitize the thing along with paper seat covers because, unlike the hover crowd, I cannot
  6. Sandra... please tell me that you have at least heard of zuchini relish, zuchini jelly, zuchini bread and fried zuchini? Like those green tomato recipes, there is nothing that can't be done with those giant green squash (other than sneaking out in the dead of night to leave baskets of them on unsuspecting neighbor's door steps!)
  7. I grew up eating fried green tomatoes (Pennsylvania Dutch version since my family is from PA) and I miss those things... just reading the recipe is making me drool! Just dredged in flour with salt and pepper then fried in a cast iron skillet with (yeppers) bacon fat. This was from a generation of farmers who drank gravy with every meal and needed those extra calories and grams of fat to work from sun up to sun down in the fields. As for the green tomato 'mock' apple pie, I remember those as well, along with green tomato jelly, green tomato soup and green tomato bread. (Country folk, nothin
  8. Hi, Nata, I know what it is like to be without insurance and feeling that frustration... knowing that you need to have something looked into and at the same time scared to death of the costs involved... feeling like you have to choose between a roof over your head and seeing a doctor. I also know that you must be feeling very frustrated because no one can give you a definitive answer on what to do about a daily low grade fever, but I can tell you that no one is brushing you off but instead they are showing their concern. None of us are medical professionals, and even if we were we woul
  9. Northend Poet, The easiest way to get into the Mayo is for your Primary Care physician to refer you there through the physicians referral system they have (that way they can have a copy of your tests and medical records and review them before they see you) but you can also try contacting them yourself because they will take patients on a case by case basis. When you go to a tertiary hospital they tend to have a team of Dr's waiting and they test you from top to bottom with Rheumatologists, Endocrinologists, Immunologists, Cardiologists, Gastrointerologists, Neurologists... lets just say t
  10. Hi, Margaret, I am sorry to hear that our Gareth is having troubles and I hope that things get better for him soon. As far as the H1N1 shot, I can't get vaccinated because of my egg allergies (they use chicken eggs in making the vaccines) but I can tell you that my family is planning on getting the shots not only to protect themselves but to try to protect me as well. If they do not get the flu then they cannot bring it home to me. I have become a hand sanitizerholic in the recent years and go nowhere without my little bottle and I use it before and after entering any public buildi
  11. Hello there, NorthEndPoet, First off I want to welcome you here... if you are looking for people that care and are willing to stand by you as you walk through the maze of testing and offer a shoulder on the bad days then you have come to the right place. Gastroparesis in itself can be a major challenge since so many of the symptoms can be contradictory (symptoms can be : weight loss or weight gain, diarrhea or constipation... in other words both ends of the extreme) and having a stomach that does not digest foods means often that it does not digest medications as well, making it that m
  12. Lyn, I think we have all had experiences with doctors like that, and like everyone else has said, it is best to look for a specialist and try to forgive the doctor for his insensitivity. I was told by an ER doctor once (within 10 seconds of him entering the room and without even coming within arms reach of me) that my chest pains and high blood pressure and pounding heart were all from stress and he should know, because he suffered from panic attacks. I got up and left immediately and went to another hospital, where they actually hooked an EKG up and saw I went into v-tach. (Just a lit
  13. Even though my ANA was negative for Sjogrens, a lip biopsy came back a screaming positive... personally I think my body is just being contrary as usual. When it came to the Schirmer test, that was an experience and a half since local anesthestics have diminished or no effect on me, so even though they used the numbing drops I felt the paper and still had a reading of 3 and 3. I will say that the lip biopsy (even though uncomfortable for me since I felt the whole thing, but my case is not typical at all and most people have no pain at all with it except for having to watch out for acidi
  14. Jeannie... I have not turned off the lights to check to see if I glowed, though Loki does give me funny looks at night now... hmmmmm... I have missed everyone very much... now that I have a diet (of sorts) to follow that makes me a little more comfortable and my latest bout of pneumonia is waning I will try to be more active. The Gastroparesis diet is what I call the "if nutritionists don't want you to eat it you know it is the right thing" diet. How many people are told "low fiber, all processed canned fruits and veggies, nothing fresh" is the way to go? It seems that all my tryin
  15. :blush: I am sorry that it has been so very long since I have last posted anything... my health took a pretty big turn for the worse and I have been bouncing from doctor to doctor and test to test trying to get a step ahead of things. My latest... they did a gastric emptying test on me (nothing like having a person wearing a lead apron and gloves holding an extension pole that itself is holding a lead container with a styrofoam cup in the lead container with a spoon sticking out of it and hearing them say "eat this" to give you that warm fuzzy feeling) and diagnosed me with severe Gastro
  16. Dear CREST at 16, First, I want to welcome you to the wide world of posting here, much of the stresses that we live with are because we have to keep things hidden, feeling like we are different and just wanting to fit in. Here, you don't have to hide anything... we do not have scars, we have badges of courage and survival. You are the same age as my daughter, and that is an exciting age when the whole world opens up for you with new promise and new hope... it is official, you are an adult. Remember, you have CREST, it soes not have you so never let it dictate what and who you are.
  17. What a wonderful tool to let people know what can be found on this site, it is fast paced enough that people do not phase out waiting yet slow enough that people can a good glimpse of everything offered! Kudos!
  18. I live in a semi-rural setting, it used to be very rural until a few years ago when all of a sudden new housing developments started popping up like jack-in-the-boxes left and right, and there have always been a few feral cats running around. There is one female in particular that always seems to somehow find a place to use as a nursery somewhere in my yard and not a year goes by that I am not trying to catch kittens, tame them, vaccinate them and find good homes for. Last year she chose a spot behind the shed for her broods, but my husband had stored some ladders there so this year she f
  19. Thought I would drop in for a quick little note here... I have telangectasia just about everywhere, face, hands, trunk, arms, legs... more whispy red lacy veins than 'normal' skin tone really. I saw a dermatologist and she said "you are light skinned, so it is not unusual". Jen- It looks like they are testing everything they can possibly test for you and I hope that you get some of the answers you need to direct you to the proper treatment of your symptoms. It sounds like you have a good team of Doctors on your side so I will keep my fingers crossed for you. I think that many
  20. Hi everyone, Like everyone else, I have been watching the Swine Flu updates on the TV and in the paper. The best advice I keep seeing is to wash your hands frequently, cover your mouth when you cough or sneeze and if you are feeling sick, stay home. I have also seen stories of how public places are taking extra care to clean commonly touched objects, such as door handles, hand rails and counter tops. My hubby and I have been carrying small bottles of hand sanitizing gel for a few years now, using them every time we are out and about. We use it when using a shopping cart, doors
  21. Down the hallway comes the squeaking of wheels, As the kitchen staff deftly delivers some meals, And some of you might find it quite surprising, That the scents that came with them were quite appetizing. And I actually lifted the cover to see, What the Hospital Chef had prepared for me. Although I had made the nurses aware, Of the foods I am allergic, it taunted me there. Eggs scrambled sat perched next to crispy fried bacon, Even smelling it was asking for trouble making. The aroma of coffee came with the meal, In a brew so strong that it could tarnish steel A single shard of toas
  22. Jeannie and Shelley, Well, I was released at 10PM friday night... seems that laying in a hospital bed and sleeping most of the time did not make my blood pressure swing wildly enough and they sent me home with a pat on my head and told me to come back if it started up again. I got home and tested it after moving around 170/109... and am not heading back just to go through the same thing again. It was 169/100 when I arrived there. They were going to do a barium swallow study, but the barium has saccharin in it, as does the other dye solution they were going to try. Artificial sweetene
  23. Karin, I just wanted to add my welcome to you to the forum. I do not currently use oxygen, but as you can see from the previous (and might I say 'wonderful') posters, there are alternatives for use in flight as well as for ease of movement and travel. I hope that you are able to find a travel solution soon so that you can resume traveling to visit your mother, just remember that for every door that seems to close another will open. You just have to know where to look.
  24. Emmi, What fantastic news! Your star is definately rising fast and there is no end in sight for you, and to think that you are doing all of this while studying for and doing your finals as well as getting ready for the entrance exams... you are an inspiration! I think that the future of the world is definitely in good hands with people like you entering University and like Jeannie, put in a little gentle nudge in hopes that you might consider being a scleroderma researcher. ;) Congrats... you deserve it.
  25. Hi everyone, Thank you all so much for all the support... I am still in a small bit of denial and shock over this, I will be going in after my Dermatologist appointment this afternoon. I have this weird feeling that I will head in and they will not admit me, saying "we don't see anything wrong" because it has happened that way so many times, but my new doctor says that I will be admitted. Margaret- They have tested my kidneys and adrenal glands (mostly looking for pheochromocytoma) in the past, but they are going to be going through those tests again as well... Mando- How right
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