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JennyT
04-23-2009, 12:26 AM
Hi everybody
Haven't been on for a little bit. I need blood transfusions:( My hemo
is way to low. haven't been doing to well the last week.
(I quess like everybody else in the same boat)
It really helps to be on this site .to stay positive.

Jennt T

pberggren1
04-23-2009, 12:34 AM
You must feel fairly weak. Hope everything goes well for you with the transfusions.

Sangye
04-23-2009, 01:38 AM
Good luck, Jenny. I've had transfusions, too. Probably a lot of us have! You'll feel so much better right away. Good thing they caught it.

Cindy M
04-23-2009, 02:05 PM
Get lots of rest and hoping you feel better soon.:o

pberggren1
04-23-2009, 04:59 PM
Speaking of hemoglobin, a friend of mine says his iron and hemoglobin are low and have been for a number of years. He says the doctors he sees don't recommend a blood transfusion. He doesn't have WG. He says his energy level is always way down and he has a lot of muscle and joint pain. This has been going on for a few years. I see no signs of WG, but he and his GP seem to think that he has Fibromyalgia. I would appreciate any insight or comments to this. He also said he was on Phenobarbitol when he was about 2 years old. Dr. Sangye?

andrew
04-23-2009, 08:14 PM
Hey Jenny. Transfusions are handy and should make you feel better. I hope you're back on deck soon. let us know how you go when you're able.

Stay groovy!

Sangye
04-24-2009, 01:05 AM
Hi Phil,
It sounds like your friend's anemia is probably not low enough for transfusions. Transfusions are extremely risky business, so doctors wisely avoid them unless absolutely necessary.

So yeah, I bet he feels lousy all the time. His iron deficiency must be addressed. It's very unusual for a man to get iron-deficiency anemia in the absence of blood loss, so there's something going wrong somewhere. Finding the cause of it is not rocket science and most MDs do a great job of hunting it down. If his isn't, time to move on. Are they at least supplementing iron?

There is a type of anemia associated with chronic disease. No one knows the real cause, just that the body kind of poops out over many years of dealing with a chronic illness. Fibromyalgia wouldn't be considered a chronic disease in this category-- these would be heavy-duty illnesses like Wegs, lupus, etc....

Anyway, it's very bad to have even mild anemia for that long. None of the body's tissues are getting sufficient oxygen, which affects their healing rate and their ability to function normally.

pberggren1
04-24-2009, 12:46 PM
He did have a lot of blood loss about a year ago when my ENT took out his tonsils and cut back his soft pallet. I think he lost about 3 to 4 pints. But his energy level was bad before this as well. He does take iron supplements.

So, low hemoglobin is otherwise known as anemia?

Have you ever heard of something called Tulsi Oil? Another friend of mine had a female friend with Fibromyalgia and she took this oil for a few years and it cured her Fibromyalgia. I'm not sure if I'm spelling it right.

Sangye
04-24-2009, 12:57 PM
He should have replenished that blood by now. They've really got to do some searching to figure it out. That just doesn't sound okay to me.

I don't know what tulsi oil is. Fibromyalgia is usually due to a bad diet-- esp sugar. Clean up the diet and correct any accompanying yeast overgrowth, and it goes away pretty quickly, within a few months.

pberggren1
04-24-2009, 08:01 PM
I know his diet is not that great. He eats a lot of pastries, pies, cakes, cookies, etc. He mostly eats out and has a lot of burgers and steaks, mostly meat. He is not a big veggie eater. He drinks a lot of coffee and diet pops as well. I have never seen him drink water or eat just a salad. I have lectured him on his diet before a few times but it seems I might as well talk to the wall.

It is actually called Leemu oil, I'm still not sure on the spelling. My other friend thinks it is harvested from the sea.

Sangye
04-24-2009, 10:55 PM
If you're a betting man, you can actually win a lot of bets by telling someone with Fibromyalgia what they eat before they tell you!

My mom had FM for about 10 yrs. It progressed to the point where she needed to take an aspirin every morning just to be able to put her socks on. You couldn't touch her anywhere-- she was in terrible pain. While she was really worsening, I started chiropractic school and learned how to correct FM. I called and said, "All you need to do is get off the sugar and bad carbs, and you'll be fine--no FM-- in 45-60 days." She'd invariably say, "Really? It can be cured? Ah, but what's life without my sugar?" So she wouldn't change.

I'd let a few months roll by, and when she really got complaining again, I'd repeat what I said. Every single time she'd say, "Why haven't you ever told me that? But no thanks, life isn't worth living without my sugar."

This insanity went on for-- I'm not kidding-- 3 years. Finally, I don't know what door in her sugar-coated mind cracked open, but she tried it. Ba-da-bing. Cured in 2 months. She had never been able to exercise because of the pain, and within less than 6 months she became a line dancer dancing 5+ hours every day.

coffeelover
04-25-2009, 07:22 AM
Listen to Sangye!
She is one of the one who recommended the anti inflam diet for me and I really have never felt better. I am still only at a 4.2 pound loss, but have much more energy and I credit the anti inflam and Weight Watchers dietary foods that I am currently eating. I used to think I could not get by without that pasta and red meat....but now I go without both most of the time and do not miss either one.
For those of you still are looking for alternative eating plans.......check out Dr. Weils website and follow his pyramid. Can you tell I am a believer.
I never knew that the symptoms of FM were due to diet. Nice to know as I have friends diagnosed with this disease.
Lisa

pberggren1
04-25-2009, 11:14 AM
Thanks Sangye for your wealth of knowledge and concern.

jola57
04-26-2009, 12:24 PM
Hi Lisa, how funny, I too have lost so far 4.2 lb but i just stick to eating 3 meals and just alittle at a time as well as nothing but fluids after 5 pm. I don't think it will help me lose the 35 lb I wanted before visiting europe but anything is great. Since losering pred to 20 I don't feel so hungry.

andrew
04-26-2009, 01:52 PM
Hey Jenny, check in. Let us know how you're doing??

coffeelover
04-27-2009, 05:41 AM
Jolanta,

I can't seem to shake that 4.2 weight loss. I have been there for over a month. My goal is 5, but after yesterdays french frie attack, I don't see how???????
I am still eating better than I used to, so baby steps to full recovery. Just like WG.
Lisa

JennyT
04-27-2009, 05:58 AM
Hi everybody

I had my transfusions this past thursday and friday i am still tired , sleep alot
how long will it take to work?

jola57
04-27-2009, 05:19 PM
Last year when I lowered my pred I rapidly lost weight, then found out that I relapsed within a few weeks and so the loss was due to flaring up. So the good news is that the longer it takes to loose the better, it means our bodies are gradually taking the weight off and our metabolism can get used to it. I know about craving, mom made great cabbage rolls, and I've had 4 today - yummm

Sangye
05-03-2009, 12:38 AM
Lisa, the pred makes your body hold onto fat like nobody's business. So even staying at a level weight is progress. NOT the progress we want, though! Try focusing more on building muscle with easy, gentle exercising. Go for time, not intensity. That'll have a greater effect on stabilizing your metabolism, increasing your energy reserves and restoring all the underlying imbalances that contribute to weight gain.

Might be better to ditch the scales and chart your progress differently. The further away I get from my earliest days with Wegs, the more perspective I have on how deeply the drugs and disease were affecting me. (Not like I'm in the clear-- no way. I was in the hospital the past 7 days with pneumonia) But when I was still on pred, I couldn't see what I can see now.

jola57
05-03-2009, 12:54 AM
Thanks Sangye for the worsds of wisdom. I just want to take this poundage off. It makes my life miserable, not being able to tie shoes (use velcro) put on socks easily (grunt and sweat) oi the life's small indignities. Vanity rears its ugly head. I don't know about our male friends but I thinkd for all of us ladies letting go of our former image is hard. I am on 20 pred now but I am to still at only4.3lb loss (must be magic number)

Sangye
05-03-2009, 01:08 AM
The opposite of pride is shame. The middle ground is acceptance.
The opposite of fighting is resignation. The middle ground is surrender.

We can really beat ourselves up with Wegs, you know? We feel ashamed and embarrassed at our appearance, and then we judge ourselves for feeling vain on top of it. I'm finding ways to be kinder to myself-- the way I'd be towards any of you for looking this way!

This is hard stuff. We meet with so much judgment (being told we look fine, nothing's wrong with us, why are we so weak, you're a whiner, etc...). It's just awful when we do it to ourselves, too.

jola57
05-03-2009, 01:19 AM
I think that is because it involves just us personally. I can deal (and do) with everything else except my appearance and the fatness. I have always been slim and active so for me its the biggest challenge. Most days I don't care its when I have to attend special functions with family thaat my vanity rears it head. I guess its the old rivalry between families. I'm also tired of letting people know that I am ill, although it shouldn't be to hard to see since I walk like a duck. How do you feel Sangy, I thought it odd that you did not write. Hope all is well now.

Sangye
05-03-2009, 01:29 AM
Hi Jolanta,
I just got out of the hospital last night-- 7 days in with pneumonia and a couple other viruses to boot. I'm not over the viral stuff, and I think a sinus infection is maybe still lingering, but I was picking up too much stuff in there. And with the swine flu thing, people are going to pour into Johns Hopkins, so my docs thought it best for me to get out as soon as I finished the 7 days of IV antibiotics.

I'm doing okay. It wasn't severe pneumonia. Just home overnight, I can really see the difference in how I look after moving around my home (making breakfast, feeding my animals, etc) vs how much energy I had after sitting in bed all those days. Real life is exhausting to me, still. Thanks for asking!

coffeelover
05-04-2009, 12:57 AM
Glad to have you back Sangye! I missed you! HOpe your continued recovery goes quickly.
In regards to the weight issue that Jolanta is struggling with (and I do too, believe me!) I know that being a pred and trying to "lose" wieght is an oxymoron, but I am competitive and hope to come out a winner in this contest (between me and pred). I would like to lose about 20, but realistically am aiming for only 5 right now. I am at the 4 mark, so making progress. The big thing is I feel better because I am eating better and I am able to walk right now for exercize.
The only downer is....My daughter had prom last night and she wanted a picture of her mom and dad with her. When I look at that picture I see a fat person, but I really donot feel fat, so I spend the days not looking at myself in pictures or in the mirror, so I can deceive myself in thinking I am not so heavy. So Jolanta, I get it it! If we continue to encourage each other with proper eating habits, we will survive! This too shal pass!
I am with Sangye on the do something nice for yourself kick. That is why I take guitar lessons or have that occasional coffee at an expensive coffee shop. It is my way of saying "Your OK Lisa. I like you LIsa. I accept you as who you are LIsa! This is a pep talk I need daily, and it works!!
Lisa

Sangye
05-04-2009, 01:19 AM
I hope I didn't give anyone the impression that I'm okay with the way my body looks! It's a major struggle to even approach acceptance and surrender. Right now I'm dipping my toes in that water for the first time, after 3 yrs of outright hating my body and resenting what it's done to me! I'm seeing how hard my body is working just to stay alive and get stronger, and how much I'm beating it down more with judgment and self-criticism. There's no compassion in that.

As I let up on myself, I'm noticing I've unleashed more energy that I can actually use to get strong. It's more joyful than the way I've been trying to do it, which has been more of a Boot Camp mentality, "Push harder, you weenie!" :D

Jack
05-04-2009, 02:53 AM
Pushing yourself to the limit just does not work, but I still have to keep reminding myself :rolleyes:. There is a great temptation to try to catch up on things when you are having a good day instead of using it to enjoy life a bit more.

My mantra is - Slow down........... Slow down........ The jobs still get done in the end, or not as the case may be.:)

jola57
05-04-2009, 04:16 PM
Slow down does not exist in my vocabulary, too much on my plate. Business to run (one place where I'm starting to delegate more), husband to run and his business, house to run, take car of kids problems, listen to mom's calls, so no time for self pity. Do not get me wrong, I work at half staf or even a 1/4 of what I used to, WG limits what I can do, but none of these can be delegated easily so for now I am it.

Lisa, I'm down almost 2lb since yesterday, hurray. Mind, now that I will be in Poland and England for a month i will probably gain everything back and more.

crackers
05-04-2009, 05:23 PM
jolanta where in england will you be? are you coming anywhere near liverpool ?
john.

coffeelover
05-05-2009, 09:13 AM
Awesome Jolanta! Congratulations on you weight loss. I, on the other hand had gained a small amount last week, but still hovering around that 4 lb loss from the initial weigh in.
We must be alot alike, because I too never stop moving because of all I have on my plate. My pace is slower, maybe (Jack is right slow slow slow) but my load has not decreased! Delegating just makes things worse for me, so I would rather do things myself if I can. I do what Jack has stated in that if I am feeling good on a particular day, I go on full throttle. I do need to learn to relax a bit....but not today! No time! ha ha

Have fun traveling. I have not left MN in a while....so desperate for a little adventure. I told myself, IF and when I get this trach out, I will book a trip to NEW Mexico to visit a friend of mine. We will see how that pans out.
LIsa

jola57
05-05-2009, 04:19 PM
John, I will be in England May 25 to June 6, as far north as Newcastle and south Plymuth and all in between. My son is looking at a graduate university and has about 6 to visit. When I have a UK sim card for my phone i will let you know here. I think Luce is from around here too, it would be nice to meet. We have Brit Rail so can move quite freely for 8 days

Cindy M
05-06-2009, 04:12 PM
I agree with wanting to take the poundage off but it seems like I hit more brick walls and excuses for over eating. I can't wait to get rid of this preds face either.

andrew
05-11-2009, 07:02 AM
Hi everybody

I had my transfusions this past thursday and friday i am still tired , sleep alot
how long will it take to work?

Hey Jenny...how are you feeling?

JennyT
05-12-2009, 06:45 AM
hey Andrew
Better now, just not enough patience I quess.
Today they found spots on my liver have to go for a mri.
he said nothing to worry about. w'll see about that one

Jenny T

andrew
05-12-2009, 06:59 AM
Oooohhh that's good to hear you're feeling better!

Spots might be granulomas from the WG???

Cindy M
05-12-2009, 08:53 AM
Glad you are feeling better.