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About sdgrrl

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  • Birthday 07/05/1954

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  1. Xan

    i am glad to see you have been posting again! I hope you are doing better, and continue to post here. you were a really big help to me when I first joined and was having complications. ((hugs))

  2. Xan

    i am glad to see you have been posting again! I hope you are doing better, and continue to post here. you were a really big help to me when I first joined and was having complications. ((hugs))

  3. Adhesions are definitely the name of the game. I have had 4 obstructions and 2 emergency surgeries from them. Trina, it's so nice to 'see you' again, it's been so long! (I'm actually having a bit of trouble with the new format and don't like some of the changes that have been made here, but it certainly explains why so many good people have left the building.)
  4. sdgrrl

    13 Bean Soup

    I make this soup also, with a couple of differences. I go a little heavier on the tomatoes, I will use either one can of Rotel and the same sized can of diced or go right for it and use a large can of Rotel or 2 regular size cans of the spicy little love apples. ;?) I usually make it with a ham bone, and then I throw in a bag of frozen mixed veg to give it a little more bang for the buck.
  5. I don't see where the recipe is, but I would love to have it. Asian/Thai/Indian food is the best! If it's posted on here, would someone point me to it? :=D
  6. I bet it would be tasty to grill/saute a ring of pineapple, too!
  7. I love chorizo, but it is kinda hard to digest, what with the assorted pork 'products' and beef 'products', it's also a little gross if I think about the noses and toeses that went into making it. HOWEVER, by far the very best chorizo I've found is SOYRIZO--seasoned and constructed just like chorizo, but as the name implies it's soy. Low fat, high protein, no toes or offal used in the preparation make it a much more guilt free experience. It's a little cheaper, too. I love spring omelets--asparagus, red peppers, scallions, soyrizo, yum! I'm going to have to muster up some energy and make some 'breakfast' for dinner.
  8. Wow, what a roller coaster of emotions! I feel your fear and wish you all the best. I have to side with the other responders about the cats. No one can make their dwelling 'sterile', and 3 cuddlies can offer a lot of love and strength. I also agree that you need to have someone who can be reliable to empty the litterbox(es)--too many germs to do yourself. Otherwise, I'd say that three kitties are actually a good thing. 1. See above re sterile environment. 2. As bonded kitties lay together, they lick and clean each other. If you have any allergic reactions to them in any way, is it something you can live with? The chemo and radiation will sap every ounce of energy you never knew you had, so taking care of your house, grocery shopping, laundry, I think you see where I'm headed. You will have enough on your plate and then some! If the 3 of them are self-sufficient and their most interactive is simply to curl u p in your lap for fur-purr time, DO IT. You need every scrap of gentle, loving, serenity to keep yourself going through this tough time. That being said, Do you have a good support system lined up for when you're in the midst of yourtherapies? I hope you have good people in your corner who will hang out or do taxing chores (and little chores, too!)...way w Important
  9. Of course you can, I gladly accept all forms of intercession! Well, it's been another day in the neighborhood. I got a call from the GI specialist's office. This was to be tomorrow's appt, which I was hoping would result in some action that would improve my quality of life. I did what I never should do--I hoped; never ever hope. It hurts so much worse when it all falls apart. The GI doc my surgeon (specifically) referred me to is in practice with several other GI docs--including 2 docs--one was a doc that I think is barely competent, except she was on call when I had my GI bleed in 2006 and managed to cauterize the bleeding in my pouch, and one other doc who literally ran into my exam room and handed me orders for a test, asked if I had any questions regarding the exam (upper GI, I've had them, no questions), then just as quickly ran out of the room. Period. So I never considered that I was the patient of either one, and was looking forward to meeting this doc to whom I was specifically referred, hoping (!) that perhaps HE would be able to help me. Apparently that is a problem, and now I don't have a GI doc OR a PCP. I don't know what to do. When I put this up with the fact that I cannot eat more than 6 bites, I can't keep weight on, it may be time to go. Life is such irony
  10. I just caught up on all the good wishes sent my way, and once again I thank this fine group of shrinking people. I made it through the holidays, I have been eating as much as I can, keeping down as much as I can...but things are definitely heading south again.:( I know my scale is not to spec, but even if I jump on the dam thing I can't get it any higher than 98lbs. With clothes on. I also am feeling pretty whipped again. I'm basically doing all the same stuff that my body did before, and I don't know how I'll find the strength to go thru this again. I still wasn't all that spry to gein with. For the first time during this ordeal, I am starting to have anxiety and panic attacks. (Wow, ya think?) My doc changed my antidepressant and gave me a scrip for xanax, but I'm really afraid to take it--and get hooked on it. But I've only had 3 or 4 brown outs and no black outs, so that's good. But my short term memory is not just bad, it's like it's gone, and left no note as to when it'd be back. That, I fear, will be my undoing. My brain has always been my favorite body part, and it is really hard for me to ask the same questions over and over. It's plenty that my body doesn't have enough ability to walk a mile, now ppl gotta remind me of everything 5 times. I have no patience! My surgeon referred me to a GI doc, so when I see him, I'll probably be in bad enough shape to have them actually recommend something, unlike my currently hated doctor who assured me that I reek of cigarette smoke (uh, thanks? And could you please close the door first so the whole effin waiting room can't hear?) But she insists that if just quit, I will magically gain weight, "everyone who quits smoking gains weight, that's your problem") this is all despite emphasizing 9 times (me-6, Michelle-3) that my appetite is NOT the issue, sometimes I cry because I'm hungry but cannot eat more than 6 bites. And I think I can feel another kink, which would explain that, or another SBO, which would most likely kill me. I just got an appt scheduled with a GI specialist, referred by my surgeon, so he must have gotten a copy of my latest labs, which I haven't seen myself. It ceases to be of importance after awhile, these 'within normal limits' things. Whose normal limits? Someone who struggles to eat over 500 calories per day? Someone who has thrown handsfull of PEs in the last 3 months? When will someone LOOK at me and LISTEN to what we know, and HEAR what words we are saying. It's so frustrating, and I intend to either get better or take a dirt nap this year. It's that hard. I gotta go--that door should have stayed shut, and I apologize for letting out some of the debilitating fear on y'all. There are towels available at the door for use in wiping off the pity party juice. Peace
  11. You are SO right, on both your observations. I absolutely agree that it should be studied! This started in 1977, went crazy with them in 1982 (36, 3 dozen! in one week!!) They put me in a study in 1980 with the Regional Kidney Disease Program in Minneapolis. They verified that my stones are primarily calcium oxalate, with an increase in uric acid since the GBS. They discovered it wasn't hyperparathyroid disease, and concluded that I absorbed 2-3 times the amount of calcium out of food I eat, but I dispute that. I have severe osteoporosis in my limbs already--what a shock, eh? The fact is that my body has been pulling all its calcium out of my bones. Last year I lost 1" in height in 2 months. And to refer back to my previous post, I'd give my 4 front crowns to find a PCP that would give a rip about me. I've got some stuff that could be of interest to researchers, and I try SOOOOO hard to be polite, but it's so hard when no one listens and (like my last PCP appt) the doctor insists on giving me samples of pills 'guaranteed to increase my appetite.' Unless she was about to give me Marinol, it wouldn't do much good--MJ is what helps me eat most of the time. I should think that with all the complications I have had, the weight loss industry should be really checking me out. I'm not done having complications--hell, I know I'm a total train wreck, working on yet another kink(?), obstruction(?) in my bowel--hence the 6 bite food limit. I wasn't all done being sick when I got the staph in my blood, and I have been trying really hard to get strong and build endurance, but it doesn't come. The anemia leeches all my energy. I bleed pink, not red. Despite the fact that the original surgeon left town shortly after the triple bowel surgery a year after the GBS, his partner at the time stayed in town. That certain remaining surgeon needed to step up for his practice and street cred and instead threw me way under the bus and told me that his practice felt no further obligation to treat me. I often wonder what my life would be like if I had been able to ask that surgeon's nut some questions to try to eat more healthy FOR ME, knowing my special 'challenges'. I know someone who's 9 months out and she does better than me most days, and I bet if instead of telling me I'm terminal and blowing me off, any single physician who listened to me over the past year and longer would get cool stuff to write about or at least know that they helped save a person's life, which I thought was a really big deal to those guys. I saw 14 of them, couldn't one, JUST ONE, have taken some sort of interest? (Hippocratic Oath, anyone?) I know that as sick as I am it doesn't seem like I'm a very nice person, but I try really hard to give the PCPs as much intel as possible (ya know, to help make me better?) and they aren't a bit interested. I go out the week after T'giving and buy 'thank you cookies' and spend a day taking them from doctor to doctor--the nice ones, anyway. Listen to me, that is really pathetic, all <100lbs of me trucking around with my cane and my pathetic boxes of shortbread, hoping it will bring me good favor for my treatment for the coming year. I agree with you 100% about the nutrients, ARRdita! Thankfully my body has metamorphosed me into a protein junkie. I'm no longer worried about 'finishing my plate, and hating good good things like fish, veggies, shellfish (they are little protein bullets!) and hopefully I will be able to pull myself up again and find some magic portal through which my health rainbow will flow smoothly and effortlessly. I try to be a good, kind person...If I just wasn't so scared of the future it would be easier I'm sure. This is not a good space to be in, and it makes me sad that despite my best efforts, this most likely will be a major factor in my shortened life, increased pain and difficulty with moving. It's def the sticky end of the lollipop.
  12. How amazing it is to read my post back in 9-09 about what a hard time I'd been having. "if I'm here next year....." Boy o boy, 14 months ago, eh? I've had somewhere around a dozen more kidney stones...including one larger than my thumbnail that it took 3smashing sessions to get it out. I am afraid to say that my body doesn't seem to be making so many of them for fear that tonight I'll wake up with a kidney stone the size of a Pomeranian! I was doing pretty well on TPN with a PICC line from March to October of this-er-last year (2010) until I got a blood staph infection in October and had to have it yanked and I had to be hospitalized for 8 days to get GInormous amounts of antibiotics into me ASAP. I started the TPN at 80lbs, and when the line got pulled I weighed 120, and now I'm around scale broke and I don't know how much I weigh now. I just know that my teeny tiny 80lb clothes are fitting well again. I had a really bad experience with my PCP last month, and I will not see her ever again. I should have known better as she IS partners with the incredibly deluded doc who waffled about me needing TPN at 80lbs. So I'm trying to take as good of care as I can of myself as possible. I spent something over $20,000 to get any toothlike structure in my mouth crowned, and now the dead, decayed, previously crowned teeth are starting to matches my bones crumbling from osteoporosis because once again, I don't have a dam doctor who gives a dam. Lordy! I would sure love to find a doctor who believes in respecting and listening to what their patients are saying. I told my about-to-be-ex doctor at least 6 times and Michelle told her at least 3 further times that my appetite is FINE. The problem is being able to keep more than 6 bites down before heaving it all at the 7th bite. So without medical guidance I am forcing myself to throw out all that I know about keeping weight off, defeating the purpose of the tool, and setting myself up to gain the weight back by grazing, snacking, all the crap I never really did but still got fat anyway. So that's how I am now that I am 5 years out for rny, 4 years out for the major replumbing of my replumbing. I wonder how it will be for me next year? I would sure love to be able to ramble on about how well I've felt and all the travelling that Michelle and I have enjoyed, ya know, kinda like we're normal people and all?
  13. I wasn't a very good grrl this wii for me...
  14. God bless u donna I will keep u n my prayers

  15. Thanks for following up on me--I've had lots of adventures since July, when I wrote last. Despite using the most careful techniques, my PICC line became occluded sometime around the end of August. When I went in for my weekly cleaning and dressing my line, they shot some TPA into it to break up the clots. It worked perfectly and I went my merry way. The morning of my day after labor day PICC cleaning, I had kind of a stitch in my side when I took a deep breath. I'd also had major migraines 6ver the previous week. I mentioned the deep breath thing at the infusion center, and instantly the nurses went into action. Numerous stethoscopes were whipped out and no breath sounds were appreciated. They called my doc's office and they said I needed to go around the corner and go to the ER. At the ER, they went crazy taking blood, hooking up to telemetry, the whole nine yards--just for a stitch in my side when I took in a deep breath? They ordered a lung ct scan, because they now thought I had pneumonia or pleurisy. The ct scan involved giving me a really strong injection of contrast, which would show if I had a pulmonary embolism. The whole time I'm all la dee da, I don't think I have pneumonia, so I'm all calm. Imagine my surprise when I find out that when they put the TPA in, it blew all these tiny blood clots through me. I didn't have migraines--it was little blood clots going thru my brain....stroke narrowly averted. As for my lungs, instead of the contrast showing a big ole blood clot in my lungs, there were dozens of tiny little clots with the contrast showing them--my lungs looked like I had tiny Italian Christmas tree lights all thru them. They totally freaked. Then my labs came back showing I had staph in my blood, and would require more blood to check for MRSA. Until they knew I was safe they kept me blessedly calm and I slept most of the week I was there. For once I didn't need surgery, the pain wasn't off the scales like it usually was. And I didn't end up with MRSA! So. Now I have no PICC line to make sure I eat, but I'm doing okay. Now I just have the anemia, low protein, and being weak as a kitten....we're all grateful that no strokes or PEs made things bad (for once) and now I'm struggling to reenter a world I was pretty sure I was leaving just a few months previous. I have so many people to thank, so many prayers offered up on our behalf, I am very grateful to all of you! I hope now I can get a little relief so I can get strong and back to living. Now I'm going to heat my leftover fish and have a little lunch. YAY!!