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Post by Mini Mia on May 26, 2019 11:55:36 GMT -6
Okay. I think I’ve figured it out now:
http://instagram.com/p/Bx70PScA6me
And I keep thinking, “Everything has an enemy. Doesn’t it? So, what is eczema’s enemy? What will kill eczema, but not harm my eyes?” Still pondering. Oh! I tried vitamin E yesterday. I poked a hole in a pill and dabbed the gel on the eczema. It worked about the same as everything else. Back to the drawing board.
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Post by Phalon on May 27, 2019 6:50:27 GMT -6
I dunno what the answer is, Joxie - eczema is a tenacious nasty little beast.
Like LX, maybe there's a cycle your eczema seems to take, and using different products for different phases of the flares will help. I mentioned some of the products that LX uses - maybe try some of them until you find a combination that works for you.
Since it's on your eyes, might you try covering them with soggy tea bags; cold, since heat seems to trigger eczema outbreaks. There are a number of teas that are supposed to be good for treating eczema - LX likes calendula best, but I read that rooibos, chamomille, red clover, green and even black tea also helps.
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Post by Mini Mia on May 27, 2019 12:29:41 GMT -6
I’ll try that later, once I’ve used the healing ointment for a few days in a row and it is hit and miss as well. Thanks for the suggestions.
[Edit]
The healing ointment is still working, so gonna give it a few more days.
[/Edit]
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Post by Mini Mia on May 28, 2019 23:55:26 GMT -6
Got a call from the doctor's office today. I was told my kidney levels are elevated, and to drink lots of water and stop taking medicines that I didn't know, so must not be taking them ... and to come back in two weeks for another blood test. Now I'm freaked. Mom had dry, crusty lesions around her eyes, and then a few months later she was in the hospital fighting for her life. Wegener's Granulomatosis had attacked her lungs, and then her kidneys. WG attacked my Aunt's kidneys first. (Mom's cousin married Dad's brother.) Everything I've found online claims it doesn't run in families, and that only 1 out of, like, 300,000 get it. I know my odds are in favor of it not being WG, but I'm still freaking out. My BP was good though, so wondering if it's the oats, or the baby aspirin, or both.
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Post by Phalon on May 29, 2019 4:44:16 GMT -6
Ok, first, you've got to stop freaking out, which is probably the hardest thing you'll have to do in the next couple of weeks. Constant worry though, brings on additional health problems - you don't want to worry yourself sick.
Then check your medications just to be sure...
The names of the medicines they told you to stop taking are probably generic names, which are sold under different names depending on the pharmaceutical companies that make them. Always best to be safe rather than sorry.
In addition to drinking lots of water, cut out or greatly limit drinks with caffeine and sugar (to include pop and fruit juice), sugary foods, processed foods (which have a ton of preservatives and salt), salty snacks and condiments (soy sauce for example), and cured and red meats. These are all diuretics which can cause dehydration symptoms, which of course affect your kidneys.
Remember too that your eye eczema is a skin condition. From a quick drill WG affects the eyes themselves (not the skin around them). WG may not be hereditary, but eczema can be, so if your Mom had eye eczema also, that doesn't mean it was even related to her WG.
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Post by Phalon on May 29, 2019 5:07:24 GMT -6
Oh, and also try to ignore negative comments from people who generally see the worst in things (your Mom's mother hen friend and your sister comes to mind) or read horror stories from people on the internet.
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Post by Mini Mia on Jun 4, 2019 0:36:27 GMT -6
I'm up, I'm down, I'm up, I'm down. Probably gonna be that way until I get answers. I made a pot of chili I've been eating on for a few days. I've got a few more bowls full left over. Usually I don't mind eating something until it's gone, but I'm kind of wanting to freeze it and move on to something else. But ... can't think of anything, and worried it needs to be home cooked, or my blood work will be the same. Guess it's a good thing I still have enough chili for the next couple of days.
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Post by Phalon on Jun 5, 2019 5:17:22 GMT -6
Sorry you're so up and down. Waiting is never easy!
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Post by Mini Mia on Jun 6, 2019 0:00:00 GMT -6
Well, it's been two weeks since the blood test ... and if it was WG my urine would most likely be blood red by now. So, I'm taking that as a good sign. Not knowing doesn't help me to know what changes would be the best to go about. Only eat homemade foods from now on? Exercise? Was it any of the pills? Is it an infection? Finding out will point me in the right direction.
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Post by Phalon on Jun 7, 2019 4:58:09 GMT -6
How long do you have to wait to be retested?
Eating better and getting more exercise is pretty much the start of any wellness plan.
I did a little something for my physical well-being last night that I usually ignore - taking care of my feet. The last couple weeks at work have been brutal on them - our two fifteen minute breaks and 30 minute lunch each day have been reduced to maybe 5-to-10 minutes off our feet a couple of times a day. My feet ache - they're just tired, or as Hubs would say my "dogs are barking". I treated them to a nice long massage; I would have much preferred to have someone else do the massaging, but they appreciated the long overdue attention. I need to try to do it more often.
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Post by Mini Mia on Jun 7, 2019 15:45:45 GMT -6
I stopped by and got blood drawn yesterday. They called today and said there was a slight decrease. Said to stop any insipids? Which is the baby aspirin I’d started taking last year. Then get another blood work done in six weeks. Then called back later and said they could check for WG in 6 weeks, or I could come in any time. I really think there would be blood in my urine by now if WG was attacking them, but I’m thinking I’ll have the test done when I go in in 6 weeks just to ease my mind 100%.
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Post by Phalon on Jun 8, 2019 5:02:53 GMT -6
Insipids? Hhmmm. NSAIDs maybe? Those kinds of medications include aspirin, ibuprofren, naproxen, and the like - anti-inflammatories. Check the labels of every OTC drug you take - some cold and allergy medications contain NSAIDs also.
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Post by Mini Mia on Jun 9, 2019 1:02:09 GMT -6
I've been taking everything else for a long time. The baby aspirin is new. Never had a problem with my blood work before, so guessing the baby aspirin is the only problem. But, I'll check the contents.
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Post by Phalon on Jun 9, 2019 7:07:35 GMT -6
Could be that if something you're taking contains an NSAID, that the addition of the baby aspirin pushed your levels higher.
If your allergy medication, for example, treats sinus headaches along with other common allergy symptoms, it probably contains an NSAID (except if it contains acetaminophen which is not an NSAID, but comes with its own set of problems).
Cough and Cold medicines often contain NSAIDs - if the label says it treats aches and pains associated with common colds, or if it reduces fever, it most certainly contains an NSAID. When the kids were little, it used to drive me nuts trying to find a basic cold and cough medicine that didn't treat fever - if they didn't have a fever, why give them something they don't need, and can be harmful?
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Post by Mini Mia on Jun 10, 2019 4:14:44 GMT -6
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Post by Phalon on Jun 11, 2019 4:24:08 GMT -6
Looks like it's just an antihistamine. Hopefully, just cutting out the baby aspirin will bring your levels back to normal. Here's a list of medications in addition to NSAIDs though, that can raise your creatinine levels; you may want to talk to your doctor if you're taking any of them. www.kidneyfailureweb.com/creatinine/804.html
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Post by Mini Mia on Jun 12, 2019 5:26:17 GMT -6
Thanks for the link.
My eczema is disappearing. My eyelids are feeling more normal now. I can go for hours without needing to put anything on them. The corners of my lips have healed, and so has the sores in my nose. I've got callus-like dermatitis on one finger that's beginning to feel like the rest of my finger. It would crack open and cause me pain for the last four or more years. I don't know which treatment I tried is working, whether it's just one, or the combination of them all, but I'm thrilled that something is doing the trick. I hope LX is getting results as well. Hers may take longer, since she's had hers longer, and she's having to deal with withdrawals from the medications she's stopped using.
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Post by Phalon on Jun 13, 2019 5:03:46 GMT -6
Congratulations, Joxie! Seems as if you've found the right combination of treatments!
I think LX is still having problems; we haven't really talked about it recently. I had ordered more of the CBD face cream, (which she really likes to wear during the day because it's very light and non-greasy) a couple of weeks ago; I was going to mail it to her, but she had enough left from the first jar to last until she came home for BP's graduation. It was such a crazy busy weekend though, she forgot it - when I noticed it was still here, I took it to the post office, and texted her to let her know it was coming. She replied that she was extremely grateful because she desperately needed it.
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Post by stepper on Jun 13, 2019 18:16:14 GMT -6
Congrats on all that Joxcee! I hope the good stuff - or the combination of good stuffs - continues to the point where you realize a complete healing.
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Post by Mini Mia on Jun 15, 2019 0:08:47 GMT -6
Thank you both. I hope others trying what I've mentioned get the same reaction. I still get some dry crust in the corners of my eyes, but it doesn't seem to be growing or spreading anymore. I'm hoping it too will go away. For a while my eyelids felt like a dry, dusty dirt patch, which wasn't as aggravating as the hard crusty, scaly mounds. I'm guessing the saline dried the eczema out even more, as it was killing it. And the healing ointment and coconut oil brought moisture back to the dry desert. I can go longer without having to put anything on my eyelids. Looking forward to not having to put anything on them at all.
I've been thinking about LX's eczema. How hers sounds like it's coming from within, and not on the surface of the skin. I'd seen a video of one woman who drank apple cider vinegar every day, and I wondered if it helps regulate the body's pH levels. She could try that. Just make sure not to exceed two tablespoons per day. Can do the full two tablespoons at one time, or two tablespoons three times, or one tablespoon six times per day. Or, maybe search to see what can be consumed to keep pH levels normal.
I'm really hoping the salt baths do the trick, along with the other things she's doing, so that she doesn't have to keep searching for the next thing to try. Hopefully, the withdrawals will be the worst of it, and when that's done she'll be on the road to kicking her eczema to the curb.
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Post by Mini Mia on Jun 15, 2019 13:19:08 GMT -6
Another thing I came across, is that cracks in the stomach lining can let acid and stomach contents seep into the body, causing problems. To heal the cracks, it was suggested to take ACV about 30 minutes or more before the first meal of the day. Overtime those cracks would heal, and the skin and other ailments connected to that seepage would start to lessen and disappear. For those who don’t want to drink ACV, there is a pill form you can take. There are bottles with different amounts. Just do research to make sure you’re taking the right dosage. I have a book that warns not to take more than two tablespoons per day. Not sure what that would be in pill form.
http://instagram.com/p/Byvf73ZgbKs
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Post by Phalon on Jun 16, 2019 8:02:20 GMT -6
I've read on a number of sites concerning eczema and asthma, something called "leaky gut syndrome" - it sounds like what you're describing.
LX is pursuing something that might give answers...and hopefully a solution to almost all of her medical concerns.
Back in April, I was waiting on a customer, and had a coughing spell - we had been looking at white pines, which at the time were loaded with pollen; one of my worst allergies. I apologized for the coughing, explaining my allergies, and he said he totally got it, being an allergy sufferer as well, and also an asthmatic - early spring, when the trees are pollinating, is one of his worst times. I said the same was true for my daughter, who also has allergies and asthma. He told me how he used a combination of things to regulate his allergies so he didn't get asthma attacks - they were all antihistamines; LX can't take antihistamines because it triggers her Sjogren's syndrome.
He paused for a moment. "Does she have eczema?" Yes, and I explained she was starting to withdraw from topical steroids. "Depression?" She's had mood swings the last couple of years. "Chronic fatigue?" She's complained for the last few years of being so tired she can sometimes barely function, no matter how much sleep she gets. "Has her asthma, and all these other things seem to be getting progressively worse?" Oh my god, yes! "She's probably been to a pulmonologist?" Yes. "A rheumatologist? A dermotologist? An allergist?" Yes, yes, and yes.
"Has she ever had her thyroid tested?"
No.
He explained that he was a semi-retired physician of internal medicine who was now more involved in research than seeing patients. Way back in medical school, he had all the same symptoms as LX - his asthma and eczema were out of control, he was depressed, suffered from chronic fatigue, and just couldn't seem to focus on his studies and was falling behind. One of his professors had a talk with him, and after he told the professor of all his health issues, the professor told him to get his thyroid tested. The man told me it changed his life.
I asked why, considering all these doctors that LX was and had seen, none of them ever mentioned she might have a thyroid issue. He said that because all these doctors she saw are trained in their specialty, they don't necessarily look at the big picture. He gave me his name and number, and said to feel free to give him a call anytime.
For a week, I did extensive research on-line before mentioning anything to LX. I wanted to make sure what this man said was actually factual, and his experience wasn't just one of those rare cases. I found that everything he said was well documented - millions of people suffer from thyroid issues that go undiagnosed for years and years because their symptoms present as other diseases. The thyroid gland regulates everything in a person's body. LX has all the symptoms of hypothyroidism, which can be easily controlled.
When I gathered the information, I told LX. She said "bless this man, and bless the universe for throwing him in your path!" She was not however, getting her hopes up - so many times in the past, she's had an appointment with one specialist or another, and walked away with basically nothing more than a feeling of "it's just something you'll have to deal with". She talked with our family doctor, who is the only doctor who has actually seemed to care instead of just treating her like a number, and who order the thyroid tests and a follow-up appointment. The follow-up was on a Monday, my day off work, and I offered to go with her if she wanted; she said yes because two sets of ears are always better than one. She drove the two and a half hours from Indiana the night before, for an early morning appointment.
It was a very disappointing appointment, so much so that at one point LX broke down crying. Her thyroid levels were within the normal range, though just barely - I liken this to saying an "A" through a "D" is considered passing in school; it was as if LX was getting a "D-" in all her classes and the teachers calling it a passing grade. The doctor said that no physician or endocrinologist would treat her for hypothyroidism based on the test results. She suggested that LX consider going on antidepressants, ordered more pulmonary testing for her asthma, and that basically her eczema was something she was "going to have to deal with". We left the office with LX feeling dejected. "I tried not to get my hopes up, but I did."
I thought about the appointment all night. Things the doctor had said triggered me to remember things I'd read when I was doing the research: No doctor will treat thyroid problems for a patient with normal test results. This is not true - research shows that the range for what is considered "normal" is too wide - within that range there is an optimal level, and LX's results are far outside of the optimum; again, she is getting a "D" within the range, but an "F" in the optimal level. There are many endocrinologists who are now looking at both test results and symptoms combined, instead of just relying on the results of a simple blood test - although there are just as many who only rely on the blood tests. The customer/doctor who'd first mentioned this said to call him anytime, and so I asked LX if she minded if I give him a call to ask what he thought about her test results. After getting a "yes! call him" from her, I did just that.
"She's got hypothyroidism" he said without hesitation when I gave him the test results. He and I had never discussed hypothyroidism vs hyperthyroidism when we first talked, but even not knowing all of her symptoms outside of worsening asthma, eczema, mood swings and fatigue, just the test results alone would indicate a hypothyroid issue because they are so close to the edges of the normal range. He told me the names of some additional tests to have her request, said that many doctors don't like to be told they are wrong, gave me the name of an endocrinologist who looks at symptoms as well as results (who, unfortunately would be a four hour drive for LX), and said if she has any problems with her doctor ordering the additional tests, to give him another call. LX contacted her family doctor again, and the doctor ordered the additional tests; she had them done the Saturday when she was home for BP's graduation.
That's the last I heard. I don't know if she got the results yet, and where she goes from here.
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Post by Mini Mia on Jun 18, 2019 0:07:55 GMT -6
I hope she's able to get it all worked out.
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Post by Mini Mia on Jun 21, 2019 23:30:18 GMT -6
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Post by Phalon on Jun 24, 2019 16:37:10 GMT -6
I hope it works for her. I'm always leery of any of those multi-level marketing companies, because many of them turn out to be scams - most often for the people they recruit to work for them, not the consumer, but still.
LX got her last batch of thyroid tests back; they are abnormal, and it's recommended she see an endocrinologist, who will hopefully get to the bottom of all this.
And I lost seven pounds in the six weeks! My work jeans from last year were a bit snug when I put them on at the beginning of this season, so I decided to make a small change. All I did differently was cut out any snacks after dinner, (although I allow myself a cup of hot dark chocolate made with 2% milk around 10pm).
Oh, and work my @ss off at the nursery.
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Post by Mini Mia on Jun 24, 2019 20:14:34 GMT -6
Yeah. I'll wait, before thinking about trying it. Which, I probably never will.
I noticed years ago that if I didn't snack after 6pm, and drank water instead of anything containing calories, I'd lose weight. However, it seems since the hot flashes, that my weight goes up, stays there for a while, then goes up. It doesn't seem to go down very often, and when it does, it goes up again and increases.
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Post by Phalon on Jun 25, 2019 5:12:11 GMT -6
Ah, yes. It's that pesky "M" word again. I read that on average, women gain around 15 pounds going through menopause.
I haven't had hot flashes in a while...although after a lifetime before menopause of wearing socks to bed and covers up to my chin, I now have to sleep with my bare legs and feet sticking out of the covers or I get hot.
We haven't had hot, humid weather yet this summer though, but I'm keeping my fingers crossed my hot flashes are a thing of the past.
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Post by Mini Mia on Jun 25, 2019 20:01:42 GMT -6
I've been getting really hot the last few weeks. It can get intense for a brief moment, but still better than the full-on hot flashes I used to get. Hoping it goes away again real soon.
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Post by Phalon on Jun 26, 2019 4:51:47 GMT -6
HA! Maybe there is hope for the both of us after-all.
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Post by Mini Mia on Jun 27, 2019 16:56:39 GMT -6
I’ve always heard that you lose heat from the soles of your feet, and the top of your head. My experience seems to prove differently. I bought some sundresses. And when I wear them, I freeze in the a/c. But, when I wear shirts, I will overheat or have hot flashes. So, my conclusion is that it is your shoulders that controls if you freeze or overheat. As an experiment, I’ve turned up the a/c to see if I can be comfortable in a sundress without dealing with overheating.
This new theory seems to also be confirmed by old styles. I’ve seen movies of historical events, and the women sometimes wear these shoulder covering jackets, sweaters, and shawls. And I used to wonder, why did they only cover the shoulders? Now I think I’ve figured that out. If anyone has more info on the reasons behind the style, please share. Thanks.
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