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UR Groovy

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About UR Groovy

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  1. I hear what you're saying, and I feel the same. I suppose that's why I do reply, and why I'll most likely continue to reply, despite my desire to withdraw myself from the forum. Everyone here takes that risk, and I know that. Thanks for offering up your opinion k
  2. Thank You, I appreciate that. I guess the fact (if you'll all indulge me) is that communication is much more than a bunch of words in a post. Believe me, I'm a huge fan of words, context, grammar, if you will, but readers can't hear Vibe. What I'm communicating now is just more of the same ... will it be misunderstood? Possibly, in fact, probably, it will - at least to some degree. Am I over-thinking? Maybe, but what happens when the wrong person says the right thing and it's taken the wrong way? I make so much more sense in person. I don't think I'm alone in this - I just think I'm less of a risk-taker than most. I'm just decreasing the odds of accidentally making someone feel crummy. I don't want to be responsible for making someone else feel crummy just because they can't hear the inflection in my voice. I'm not bummed or anything. I'm happy as a clam to stay out of forums, where things such as this exist for me. Nothing happened today or with the other thread that hasn't occurred to me many times in the past. The only difference now is that what I said before can't be changed - at least not without the type of effort that I'm not really willing to put into it. {{{{Insert emoticon: Left eyebrow raised, head slightly cocked to the right, mouth opened slightly, half-smiling and a deep breath IN that suggests that I'm not really stoked about it, but that's the way it is.}}}} {{{{Insert emoticon: A content smile with a message:}}}} LOVE
  3. Yes, I could do that, I just don't want to. I guess I'm just not a message board person - that's okay with me. I guess it's that I say things that I wish I hadn't, even though I really do feel that way - at the time - my bad. Part of it is that through these last 2 years gluten-free, my opinions have changed at times. I sometimes don't feel like I did last year, or eve 5 minutes ago. I wish i didn't care about people who are struggling, but I do, and so i let a little piece of me go out there. I offer it up because maybe it'll help someone, but then I realize how rediculous it is that I think I can take a piece of me and help someone else with it. Nonsense. I own this. I think I won't be back here to post again, but there may come a time when I feel differently. thanks for everything, Safe Travels, Take care, yadda,yadda,yadda ... k
  4. Oh, blast - I forgot you can't edit anymore. I'm not down with that. I won't be back, thanks. In regards to my previous post: Jason, it's none of my business how you look at it, and I wish I hadn't replied. It was well-intended, and I hope you're feeling better every day. Take care, k
  5. Hi There Jason, I think I've pissed you off before, and I'm sorry for that. I keep staying away from your posts because I don't want to piss you off - my goal is to send you one of these: I just have to tell you this, because maybe it'll help a little. I hope so ... or maybe it'll help someone else - I don't know. One of the things that most of us have in common here is that we have had to adjust our lifestyles and see life through a new set of eyes. For some, the transition has been fairly easy - but that's not the way it usually goes. Typically, we are fearful about how we're perceived by others - we're disturbed by the insensitivity of others who don't understand what it's like for us - we feel that this whole thing is unjust, and others should understand that ... many of us have been very ill and paid a lot of money. There may be a difference between who it's easy for and who it's not. I struggled for about 6-8 months with some of these issues - the social eating thing was huge, so I'll address only that. I don't know about others and how they overcame it, but I would be interested to know. I'm gonna just throw this out there - I don't know what you're like in your daily life, so you may already have a grip on this ... I don't know, but ... I dislike the phrase 'aha moment', but I'm going to use it anyway. At some point, probably my biggest aha moment happened. I realized that I don't need to defend this to anyone. These are the facts: When I eat out or in a social situation, I need to adjust my expectations of what I can and can't eat. I'm not asking anyone else to adjust anything - except maybe the restaurant we choose. Everybody else who's watching and possibly judging me can deal with it - it's my problem, not theirs, so go judge something or somebody else. These are the facts: I cannot eat a bunch of crap that's going to make me sick. Would you eat stuff that makes you sick? Oh, sure, I could take the risk, but the cost is too much, so deal with it. Once I stopped defending my position & began stating it as fact, most of the judgements stopped, and life became a bit easier (BTW, it's a confident fact - there's no apology or defensive tone involved). I began to accept this fact in my life and adjust accordingly. Now, I rarely offend anyone, and I pretty much never get 'the look'. Mostly, people are interested in this fact - the interest wanes, the subject goes away, and is accepted as fact. Sometimes, it happens - the look -, but I don't really care. I cannot eat it, or take the risk. It took a high level of acceptance to pull it off - ya can't fight it. Acceptance is crucial. It's true - sometimes, when I'm in a restaurant situation, I can't have the linguine with clams, but that's the fact - I can't. My only 2 options are these: Get sick - really sick, or eat a fruit plate or something. I take comfort in the facts now. I don't have to defend them - what's to defend? There's no argument anywhere in there - it's just the truth. I deal with it ... I do, and it changed me to some degree. Call it a life lesson for me. I state the facts, and when I do, I find that people will generally find that a very attractive trait. What's true for me may not be true for anyone else, but it's the facts - the truth, at least for me. Take care, k
  6. Hi, I noticed when I woke up today, I felt thinner. Maybe I had some PMS water retention going on a couple days ago, and I've been paying closer attention to my diet. I'm 169 now. That's a little easier to swallow than 172. I'm setting a specific short-term goal of 160 by November 1. I think I can do it. I'm going to challenge myself. Take care, eat well, k
  7. Hi everybody & Welcome Hummingbird - glad you're here, So, I've signed up for spark people dot com. It looks pretty great. I definitely like how the nutrition counter works and I like the goal setting - looks pretty comprehensive. Thanks Liz for recommending it. I just stopped by to weigh in - I did pretty well this weekend. I'm 171 today. Man, how did I get to the point where I need to lose 20 lbs? That's crazy. k
  8. I have been breakinig out with this for about 25 years. I've heard too many thories: GP says irritation from something rubbing (c'mon - if it's that, why do I break out on both feet in the same location and both hands all at the same time?). Metal allergy - again, why both hands and both feel simultaneously and why is it so cyclical (every few months, it clears up and then it comes back). I've tried to connect it to metals, but I don't see it. Dermatologist once said stress - I have seen a correlation with stress, but I've also been not stressed and broken out. My last really nasty overnight breakout was directly after an extremely stressful family phone call which ended in nausea, sweating, and panic symptoms. I've heard that acidity / alkalinity could be a factor, and I have to say that when I'm eating more foods that increase acidity, I tend to have a constant, low grade breakout. Nobody seems to have ever come up with any clear-cut reasons why, but here's what I think is true for myself: If I'm eating right, and I keep my body in balance (bad/good bacteria as well as Ph) and don't encounter extreme emotional stress, I can stay relatively clear. However, the moment something upsets the balance, I can feel that burn below the skin and then the itching, and then the breakout. It's been better since gluten-free, no doubt, but it's still there - waiting to pounce. It really gets under my skin. Info: I'm undiagnosed, so I don't know if i'm Celiac - I haven't had allergy testing since I was a kid - My Mother has it too.
  9. FYI: Thursday night on the History Channel, the series Modern Marvels is doing a show on Wheat. EDIT: Description is: 'How wheat feeds the world; wheat becomes everything from bread to beer' Seems kind of backwards, considering that I'm gluten-free, but I'm kind of interested in watching it - thought you guys might be too. k
  10. Hi Amelie, I was really hoping Steven would have some reduction in swelling. I know how miserable that it. My swelling was mostly prettty mild, but I had one summer where my feet were pretty unrecognizable. Are you on reduced sodium? Is he still eating dairy? You're so right - it's frustrating that there is no cure - what bothers me more is they can't give a reason why it happened in the first place. I'm pretty sure I've read more than once that kidney transplants are not that successful for curing this, and that MCD will likely return. When I was withdrawing from the Prednisone, the worst part was the extreme fatigue. 'Exhaustion' doesn't begin to describe what I was going through. My energy returned to normal about 2 or 3 weeks after I was done completely. I think, if I remember correctly, it was my lab results that told me that I was worse than before. It spiked somewhere in the 3rd month too. The end went something like this: I spent a couple weeks at 10 mg & another 2 at 5mg. I think I was sick just because I was so exhausted that I wasn't moving my body at all, and I was so depressed - 8 months is a big chunk of life. It's hard to comment about what may be going on with Steven - this disease is such a mystery, and I have no idea what his levels are (frankly, even if I did, I still wouldn't assume that I know anything about his case). I refused Cyclosporine after dealing with the Prednisone & have also refused chemotherapy drugs (Cytoxin), so I can't say what the Cyclosporine might be affecting with Steven. I've heard good things about Cell-Cept (sp?). I know it's stupid to refuse medication, but I'm pretty stubborn - for me, it's a quality of life thing - I can't bear the thought of going through treatment again. I think I'd rather die - literally. Again, I know it's probably stupid - I guess I'm a rebel. Anyway, I do hope that you two are doing better soon. I really feel for you. My husband and I were newlyweds when I began treatment (for my 6th anniversary, I got 20 pounds and case of shingles). He held my hand a lot and loved me. I cried a lot (to myself). I try not to go there anymore. Please take care of each other and let us know how you're doing. k
  11. You're thinking about a triathalon? That sounds like fun - and a lot of work. So, I decided to measure the same areas - my inches add up to 155. I'm really disappointed in myself - and, as usual, my husband has gained with me - we're both horribly out of shape - our bellies are both causing posture issues. It doesn't look good. I've got to 'move it, move it'. This is very impressive. I'm such a slacker. The cat cracks me up ! I saw the story & immediately thought, 'that's what I'm gonna look like if I don't watch it'. ------------------------------------------------ Went to see Dana Carvey last night - it took half the day just to figure out what I was going to wear. So, I wore these skin-tight clam-diggers with a giant loose blouse to cover my more-than-ample muffin-top. What the heck...they used to look awesome. All the cute little shirts I got last summer look terrible. My fat shorts are snug. My laziness has become out of control. I will go to the gym today I will go to the gym today I will go to the gym today. I will not eat potato chips & chocolate. k
  12. Hi, I also suffered from diarrhea almost every day before I went gluten free. I've never been tested for Celiac - I got aggrevated with my nephrologist & decided to do an elimination diet. I definitely have a problem with gluten. As for how long it takes, I can only tell you what happened with me - anyone here will tell you that every body responds differently. It was only a couple days before I noticed that the swelling was almost completely gone - my face began to look less puffy really quickly too. I lost 8 lbs in the 1st week - presumably the water I was holding in my feet, etc. The cramping & diarrhea took a couple weeks to go away, but the diarrhea came back after about a couple months (but not so much the cramping - I stopped dairy again, which seemed to do the trick. I'm back on dairy now, even though I'm aware it's a bit of an issue - not near the issue that gluten is. I'll be interested to know how it goes for you two. Stick around. Lots of info here - you'd be surprised how confusing it can be - with time, it gets to be 2nd nature. k
  13. Hey there, everyone, So, I'm back to confess. I'm super fat. I've been bad ... very bad. I'm a clean 170 - there, I said it. Stuff's been pretty awesome. Summer in SD - who could ask for more? I went bathing suit shopping yesterday, because we've been beaching it lately - water's 70-72 degrees - awesome ! Anyway, as I was looking at this suit I was trying on, it dawned on me ... it's not the bathing suit that's the problem - my suit looks stupid because I'm fat ! So, needless to say, I didn't get a bathing suit. i figure all the suits will be off the shelves in less than a month, so I don't have much time. It's pretty simple. I need to work out. I'm weak, like a piece of rice paper. My lungs are weak (smoking aside, the only cardio I get is frolicking in the waves). I need to make better food choices & not eat whatever I feel like. It's a great summer, but I gotta get to work, here. I'm really not taking any steps toward losing the weight or toning up the bod. Off-topic Hey, Liz - how's it going? There's another MCD person. Hopefully, she'll hang around and let us know how it goes with her husband - poor guy - I remember the last part of that treatment was torture. Anyway, hope you're having a slammin' summer. Hello to all the new folks. Sorry we haven't been around much - I think that we have a tendency to come around when we get a spark of motivation or see our tushes in the mirror or something. Anyway, welcome ! Hey Donna, How's your place going? I'm out. I will exercise - I will eat right. k
  14. Hello Amelie, I'm Kat. I have MCD as well. I'm not in remission. I've not been in remission since diagnosis. I was also on Prednisone, and began tapering off 6 1/2 months into it when my nephrologist realized that the Prednisone wasn't working for me, so 8 months after treatment began and 35 lbs. later, my numbers were worse than at diagnosis. Here's why I'm replying: When I was tapering off the Prednisone, it was murder. I was exhausted and sick from the withdrawals. I was puffed up like a balloon, and I felt like sleeping all day long. It could be that the withdrawals are bad for him. Funny, as horrible as the Prednisone was (shingles, and all the rest), the withdrawals were the worse. Anyway, it was about two or so years later that I went gluten-free. My labs improved more than they had the whole time I was being 'treated'. I haven't had ankle or hand swelling since, but I can see that I'm still spilling protein. My kidney function continues to be perfect, though, and the last couple times I was tested, it was only 1-2 grams / 24 hr (which, I guess, technically, takes me out of the MCD zone, but is not considered remission). I guess it could be that I'm just a more stubborn case than Lonewolf and the boy, or maybe it's that they were both tapering from the Prednisone when they went gluten-free - I wasn't. Maybe I'm just higher on the spectrum or that there are other contributing factors that I'm not aware of. Anyway, let us know how it goes with your husband I hope that going gluten free makes a difference ... it certainly has for me.
  15. Changing my post - don't want to leave it out there for those of you who maybe haven't seen the results. I'll be back tomorrow, because - Wow.
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