Penny

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Everything posted by Penny

  1. 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 was not going to get one of those things! Then I did (or rather the hubby did after I fell one too many times for his comfort) and.... I wish I had years ago! This thing is great! The toilet seat raiser- once again, this is something I associate with the elderly and I wanted nothing to do with it. The thought that I needed an aide in that most basic of places was just too much. Yes, getting up and down was very painful, but it was not something that I was willing to even talk about. Then I fell and hurt myself and the next day in comes the hubby with a raiser and I was furious! I would not use it... it was for 'old people'! Well... he put that thing on and refused to remove it and I had no choice but to use it. The difference was amazing... those few inches made a huge differeince in my life! Handy holders- These are contraptions that you strap on your hands that have little velcro or elastic bands that you slip utensils into to grip them so that you don't drop them. I was picturing having spoons and forks tied to my hands and could see myself forgetting that I could not put the things down and scratching my eyebrow and annointing my head with mashed potatoes! Truth is, I use them only at home but I find alot of uses for them and they have probably made my life easier in ways never immagined! I use them brushing my teeth (no more dropping the toothbrush or fighting to keep it 'aimed' the right way) holding knives for cutting (not chopping, but cutting things like bread and other every day things) and even holding a brush. Things that I would fight tooth and nail over while having a good old fashioned :temper-tantrum: have now become every day things that help me have a :happy-day: .
  2. 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 for one chocolate cream pie, so she figured that she could just sprinkle the pie crust with salt and press it in before baking it then fill as usual... and we all had salty chocolate cream pie! Just a week or so ago at the ER as I was getting ready to check out I was asked to sign the release form and sat there making little circles because I could not remember how to sign my name! :emoticon-bang-head: I ended up making a scribble and claiming it as my name and leaving. Just yesterday I went to the store for ground turkey, all I needed was ground turkey. I got to the store... and... forgot what I was there for. So, I wandered the isles for a while and left empty handed and we ended up having soup instead for dinner with my hubby mourning the fact that there was no meat loaf. Well, one good thing about these fogs is that now, when we go on our trips I get to see all new scenery all the time. We go the same route every trip, but I forget where I am and do not recognize anything so often that every trip is an adventure. I would go on, but I just realized that I left my clothes in the dryer last night and I have to decide if I am going to wash them again or attempt ironing... I hate ironing and it is often just too much effort so I think I will go wash them again.
  3. 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'.
  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 it there to get the hubby's attention in stores because he gets easily distracted by the bright shiny electronics ) and children are drawn to the idea of an adult riding in a wheelchair with a bright bell like moths. They ask questions and I answer them in simple bright terms. Their parents will often try to stop them and will appologise and I will say "it is okay, they are curious and I don't mind answering questions." That often leads to talking with the parents and the children asking even more questions. All involved and up leaving those experiences with a smile. (Of course, the child just 'has' to ring the bell a few times to see if it is real making us all laugh!) My own children grew up with me being handicapped and as a result I have seen them streak off in a store (scaring me half to death at the time) only to discover that they are racing to help someone open a door or reach an item, because instead of being taught 'do not stare' they grew up 'seeing' everyone.
  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 hover! Teenagers that use the motorized carts that stores provide. I have seen teens walk into stores in giggling groups and hop into the carts like they are there for fun then take off in them. There is nothing the stores can do, they cannot prevent anyone that wants to use them from using them. People who push a person in a wheelchair out of their way so that they can reach what they want then and there. You would not believe how many times this has happened to me! I will use my wheelchair in Malls and people will actually push me in my chair to the side if they want to get something. It is not like I am 'parking' someplace blocking access, I am shopping!
  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, nothing goes to waste!)
  8. Hi all... For me it would be the coast of Ireland. I want to sit on the pebbled shore, hidden in the cloying mists as the sun slowly rises over the horizon painting, slowly burning away the fog and mists. I want to watch the waves tickle and tease the coast and dream of mermaids and pixies hiding in the wood behind me, peeking in on me as well. Penny
  9. :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 Gastroparesis. Now, all of a sudden the doctors no longer give me that 'uh-huh' look when I tell them that I do not eat and am never hungry... nor so they give me a hard time about not being able to keep any medications down. Instead they are rubbing their hands in glee thinking "oh boy... my first gastric pacemaker patient!" I think I will let them have their little fantasy for a bit before reminding them that I can't have general anesthesia. Add to this that I keep getting pneumonia (thanks to the fact that my swallow reflex seems to be on again off again so if I am not careful I breath in a sip instead of swallow it) and you have a pretty good idea of what I have been busy with. I will be reading through the posts (ya' all went and changed the forum look and I have to learn all over again how to navigate this thing... anyone have a GPS I can borrow?) and trying to catch up on everything... Huge hugs!!!!
  10. 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 would not be able to tell you how to handle a health situation online because there might be a situation going on that needs to be investigated. When I was without health insurance I went to a local clinic that was staffed by volunteers and charged on a very affordable sliding scale... they often have associations with hospitals for testing and specialists that volunteer office time and even offer prescription assistance or have their own pharmacy with the stock donated by the manufacturers. Yes, I felt weird going in the first time thinking "I do not belong in a place like this" but I discovered that this is exactly why clinics like that exist. They are there for people who, through no fault of their own, are in a situation where they have no insurance and need help. I needed the help. We are here for you and will help you in any way we can... if you want help finding a clinic in your area you can send me a private message through the board and I will help you find the information for any programs or clinics in your area. There is no shame in going to a clinic, I promise you this.
  11. 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 that if there is an 'ologist' there you will probably see them. Gastroparesis is actually not a rare condition, but it is probably one of those misdiagnosed and under-diagnosed conditions when it comes to abdominal issues, which is sad when it takes a very simple test (the gastric emptying test) to find it. The problem is that once the condition is found most Dr's have no idea what to do about it. There are medications out there, but they can be very hard on the body and there are proceedures such as botox injections to the stomach and gastric pacemakers that can be tried. Some Dr's may brush off gastroparesis as a 'mild' condition that people just have to deal with, but it is a condition that does need investigation and tertiary hospitals (such as the Mayo) actually see many gastroparesis patients and their Dr's are tops in the feild. When it comes to deciding how much to share with family and when to tell your family, that is a personal decision and I fully understand the feeling that you do not want them hovering over you and worrying about you. You might want to give small hints and maybe a little 'light' information (such as 'I have been having some stomach issues and you remember my old back issues, well, they just want to make sure everything is okay') so that they are not left totally out of the loop yet at the same time you do not feel crowded with good intentions.
  12. 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 building as well as using it to wipe down shopping carts (everyone handles them all the time, and it only takes a moment to clean the push bar). This being said, I am, myself, just recovering from another bout of pneumonia brought on by a combination of allergies (it has been a very damp year here and everything outside is covered with algae and mold) and asthma and I am worried about this cold and flu season. I think that the best any of us can do is be ever vigilant on hyguene, try to get the proper amount of rest and try to avoid public venues if and when the flu hits our area.
  13. 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 much harder to control conditions. This does not mean that it cannot be done... but alternate ways of treating conditions need to be looked into. There are patches on the market for blood pressure medications, and I have even heard that there are supositories available (which I am looking into since I have non-emotional labile hypertension and am allergic to adhesives so patches are out). If you have not yet been to a tertiary hospital (John Hopkins, Mayo or another specialty hospital) then you might want to discuss with your doctor going to one to have your stomach issues evaluated fully and a treatment plan instigated as well as having the specialized testing needed to get to the bottom of your total body health. I am not saying that your stomach issues are the only thing you need to look into, but you need to be able to take in calories and nutrients in order to have the strength needed to deal with everything else so it is often a good first step. There are also diets that are specific to gastroparesis, foods to avoid since they are harder to digest and move along and ways to aid digestion so that what you do eat works for you and not against you.
  14. 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 little heart attack... very mild, but not 'stress') Another time I was told that my ANA was negative for everything autoimmune, but that my Hashimoto's Thyroiditis still required treatment (I see I am not the only one with this confusing bit of wisdom). Then a lip biopsy came back positive for Sjogrens, but the rheumatologist wanted to dismiss that as well because the ANA was negative. (The battle on the phone could be heard in the waiting room as my old rheumatologist and Oral Surgeon went at it.) I know it can get very frustrating, but you will find a doctor that will not only listen but who will also fight through the confusion with you... I thought it would never happen for me but it finally did!
  15. 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 acidic foods and drinks for a day or two) is probably the best thing you can do for yourself to get a definitave answer.
  16. 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 trying to eat healthier was what was destroying me! :blink:
  17. 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. Speaking about difficulty to those who have to deal with simular things can be very freeing... you are not alone. You have a family here-- Aunts, Uncles, brothers and sisters who will always have open arms to hug and jokes to share when you feel down.
  18. 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!
  19. 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 found a new spot, under my porch. This is all well and good; the kittens will be a bit easier to catch and I might even be able to catch the mother if I play my cards right and get her vaccinated and maybe even spayed this time since the local shelters are having a free spay/neuter drive. (I have managed to catch her a few times in the past and sweet talked a vet into giving her rabies vaccines and so forth and this June she is due for her next rabies booster.) No one asked Loki what he thought of this development, but I think that his opinion would be a veracious paw down after his recent interaction with Mama Cat. It has been pretty hot the past few days and as a treat for Loki I went ahead and opened his pool early this year. I had gotten him one of those plastic kiddy wading pools with a slide last year and he loved it, dashing up the quick steps made out of paving blocks then skittering down the slide and pouncing around in the shallow water before scrambling back up the slide to lay down in the sun and dry off. He was full of quivering excitement as he watched me pull out his pool and give it a quick wipe down before filling it with the hose, dancing in circles then peering over the edge and barking at the swirling water as it filled. He was so excited that he did not even notice that Mama Cat, his arch nemesis, was beside the porch watching him with feline disdain. I turned off the hose and called Loki over to me then told him to go get his towel from the porch and with a happy yip he spun and dashed to the porch steps sliding to a startled stop at the sight that greeted him at the bottom of the steps. There stood Mama Cat, her back at full arch, twisting slightly to the side as her tail puffed into a bristle, spitting at him and side hopping towards him. With a yelp, my brave little dog who has barked his fool head off at black bears and is not one bit afraid of dogs ten times his size, tucked tail and raced towards me eyes as big as saucers and screaming the entire way. Before I knew what was happening he had flung his little trembling body into my arms and was trying to bury himself under my shirt and me, being the supportive and loving doggy mom that I am, laughed like there was no tomorrow. When hubby got home he was put to work placing lattice around the porch, leaving a small opening at the back, far away from the stairs, for Mama and brood to come and go but that does not give Loki any comfort at this time. It is cooler today and the pool will not be used, which is just fine with Loki since he does not want to use the steps without an armed guard present. Mama Cat has not moved her brood, they are still under there and in a few weeks time there will be kittens staggering around and a few weeks after that I will hopefully have them inside in some old ferret cages teaching them that people can be very nice and preparing them for safe and comfortable homes. Loki knows the drills for baby kittens in the home and though he is not thrilled he does well with them and will even allow them to crawl over him and sleep next to him after they have tamed and have been vaccinated since interaction with dogs helps them adjust to a new home. Right now, though Loki would give you a wary eye and whisper to you "Be careful of the porch - a monster lives there."
  20. 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 of us could do with a "patient, happy hat" as you put it, because, at least in the beginning of the diagnosis process, the waits can be long and frustrating and it can take years before the "ah-hah!" moment.
  21. 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 or public phones. We use it before we enter any public building and after leaving. We started using it after he brought home the flu and gave it to me, since I cannot have flu shots and have asthma and a depressed immune system it hit me hard and required hospitalization. Maybe we have just been lucky, but we have managed to avoid the flu for two years now and have caught less colds. My children carry bottles with them to school (one to high school and one to college) and they have had less colds as well. As stated in previous posts, those masks really can't help much in preventing someone from catching a cold or flu. They can help keep someone who has a cold or flu from spreading it, however, since they cover the mouth. Keep in mind, I can't even play a doctor on TV and can only pass on what I have seen on the news and been told by family members in the health field.
  22. 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 toast sat limp by the side And a sliver of melon about a finger wide. I had told them my allergy to eggs and need for bland food, And this gift from the kitchen did little for my mood. Salt free I can deal with, I do all the time, But to take away sugar and replace with artificial was a crime. So there I sat with a meal I could not touch, Not that I ever do eat much But to be tempted with food I love but can’t eat Left me feeling betrayed and quite beat Seeing that I was not in a good mood, My nurse asked why I had not touched my food, I told her my trouble and she said not to worry, That another plate would arrive in a hurry, And sure enough it came and I looked at my stash, And anger gave to laughter in a withering flash, No scrambled eggs there, wilted toast or melon, Nor bacon or coffee, just a tale worth the tellin’ On the plate sat, pretty as you please, French toast and a sausage for dieting ease And a tall glass of tomato juice to sip with the meal, The nurse looked confused as my laughter did peal, I just waved her away, it was not worth the trouble, If that last plate was bad this one was double. I am allergic to eggs, can’t stomach grease, And I will not tell you what tomato juice does, if you please. So I covered it up and decided to laugh not cry At least this is one meal that will not find my thigh.
  23. 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 sweeteners cause migraines for me, so they could not do that study. The doctor who sent me home said "Go to John Hopkin's" (what a great idea, gee why didn't I think of that? <_< ) I will be afraid to answer my phone tomorrow and Monday, because my doctor is going to have fits... he did not want me to leave without answers, but I can see where the hospital doctors are coming from, that bed could be used by someone they can actually help. So... in a strange way, it went almost exactly like I thought it would, they saw nothing and sent me home. My doctor, who happened to catch the BP fluctuations himself, believes me at least. Anyway, I am home.... and I want to send out a special warm fuzzy hug to Jeannie who called me to see how things were going.
  24. 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.
  25. 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.