-
Posts
81 -
Joined
-
Last visited
minton's Achievements
-
-
I am by no means a certified doctor, but I am also not an idiot. I have an eye appointment on Monday. Both my dentist and my regular doctor have requested that I get tested for Sjorgren's, which of course, my eye doctor could easily run the eye tests for at this appointment.
A little background info: I am 19 years old and have had over 80 dental fillings. At the moment, I am in the process of having ALL of my teeth replaced with crowns because if I don't do it NOW, I'll need dentures by time I'm 23. My teeth are horribly rotten, from a permanent dry mouth and from lack of nutrients prior to celiac diagnosis. I have dry itchy eyes all the time and wake up with the most disgusting thick filmy goop covering my eyes each morning. I have also suffered from vaginal dryness for at least 2 years. My aunt was also diagnosed with Sjogren's last year. Considering these symptoms, both doctors think Sjogren's is the likely culprit and want the stupid tests done.
Like any good patient, I called my eye doctor ahead of time and let her know that these tests were being requested. I also asked of course whether or not I would be able to drive myself home after these tests and all those safety questions. I got the brush off from my eye doctor though. She basically told me that while its fine that the other doctors want her to run the tests, she doesn't know if she will bother because the disease is so rare. When I offered to get her in touch with the two other doctors, the response was "Oh I'm too busy for all of that." I hope she reserves time on monday to argue with me...cuz if she decides not to bother running the tests, I'll get the doctors on the phone and argue with the eye doctor all day until she backs down and does the tests.
I don't know if I would be as cheesed off if it was just a whim of mine to ask for the tests, but I'm livid that she brushed off the tests after 2 other medical professionals ordered me to get them. I have been using the same eye doctor since I was 2 years old, and that fact is probably the only reason I'm not hunting for a new eye doctor. My mom is livid at the way this is being handled too, and she has a calmer disposition than I do.
This is not the first doctor that has acted this way towards me...I had a pediatrician tell me after I was diagnosed celiac that the disease DIDN'T exist, just to cite another example. Don't get me wrong, I like my regular doctor, the dentist I could do without, but she does her work well. But after my numerous "ignorant doctor" experiences, I'm starting to wonder...are these people really working for our best interest at all?! Some of them have even made me wonder if their degrees are fake. I'm getting so frustrated with doctors....
-
*~*UPDATE!*~*
I had surgery on September 9th, like I said, it was the first in a series of 2, to 3 surgeries to fix my teeth. While I had no medical cause, I did go to another realm and I did talk to some already past loved ones. It was AMAZING. I don't remember the topics discussed, I just remember talking. It was like being in a big white room, but you could see walls, just sense them. The energy in the room was joyful and loving. The love felt so strong it felt tangible, like you could touch it and hold it. and the joy felt like it permeated into my bones, straight through every cell in my body. And it stayed. I didn't wanna wake up, but it wasnt my time to die and I accepted it. I'm not sorry.
I woke up and the feeling of love has stayed. I want to hug everyone and tell everyone I love them and I want to share my happiness with everyone. (And no, its not the drugs, I have been off pain pills long enough to know) I woke up with 2 distinct messages: my mom's mom loves her and is still here and my dad's mom loves him and is watching out for him. I know I talked to them. The joy has stayed too, but I feel like crying...I want to cry for joy, but I dont want anyone to see me cry because I dont want anyone to think I'm sad. I'm so full of joy, my only regret is well, I wish RED was at my side so I could share this joy with him. But still, I know hes here. In fact, he turned on my laptop right in front of my eyes today, while I was across the room. And the depression and grief is gone. I still miss him, but I know hes not really gone. He's here, he's just invisible to the human eye. And he has more to tell me during the next surgery. I can't wait. I feel like I'm starting a huge race, waiting for the start gun to go off....so happy and full of excitement to get started.
They gave me lortabs for pain and I had to stop them almost immediately because they made me itch and the pain was not severe anyway but I am having "coming down effects". My stomach is a little sensitive and my head a little light, but I imagine it will get better. I feel like a new life has been given to me and I am so ready to embrace it fully and share this love I feel with the whole world.
-
If you are truly NOT SCARED of dying, then you are WAY ahead of the curve. I tmay be difficult for other poeple to understand that you're not afraid of something that they fear, and they won't be able to sympathize. If, however, you are finding yourself DESIROUS of death, then you need some attention from a professional.
I'm also curious if you've been completely indoors since your Red died. Going from constant sunlight exposure to indoors all the time could be wreaking havoc with your vitamin and hormone levels, increasing your depression.
I used to fear death, but not because death itself was scary...I feared death because I knew RED would be left without anyone to take care of him. Now that he's dead, I just kinda look at death as the time when I get to join him again. I want to try to keep living without him, but if death comes knocking, I won't argue too much.
I have not been completely indoors since his death...I have been trying to go to the park and walk (since I'm unemployed, I'm trying to walk everywhere locally anyway to save gas). I haven't been back to RED's grave in over a year because I know his spirit never goes there. I'd rather go to places he and I went together, places I can still feel his energy at.
I'd say that overall I spend about the same amount of time outside as I did before his death.
-
I go in for surgery on September 9. I will have 2 surgeries, each about 8 hours long, where all of my teeth will be getting crowns put into place. My dentist and I suspect Sjogrens to be the culprit and she may do the lip biopsy test for it while I'm in surgery. We are having to use general anesthesia because I have long become immune to the effects of laughing gas and the 'caine products.
But there's something about these surgeries... I keep getting a very strong gut instinct that I won't be waking up from the surgery at all. My gut instincts are normally pretty accurate. but rather than being distressed or scared about the surgery based on the instinct, I'm very calm. In fact, I'm even a little excited. The first time the instinct hit me, it was unsettling, but immediately, a sense of kinda relief came over me. I know that while I'm knocked out, RED will be by my side and so if a complication occurred and I died, he would be right there from the instant I leave my body. And if it happens, I also know I won't have to leave him again, that he and I will be together forever.
I'm not saying that I want to die during one of the surgeries, but if my instinct is correct and I do die, it doesn't bother me. But everyone I have mentioned this to gets all pissed off at me, saying I'm selfish to feel that way. Is it really selfish to be okay with dying?
-
I don't have the resources for another horse, nor do I have the heart. I did adopt a kitten...he was caught breaking into the garage looking for food and his name is Banana.... but as much as I do love banana, he is not my horse and sometimes its hard to even look at this kitten knowing that he needs me but he isn't the one that I need. And to make it worse, while I love him dearly, my poor nose is screaming...I'm allergic to kitties and dogs and everything outdoors too. My mom used to tease me that the only outdoor thing I wasn't allergic to was horses (and for the most part, its true).
When RED died, they honestly thought I was going to jump in the grave with him. I didn't...I'm not stupid-the fall would only break a leg at the very least. But I sure did contemplate suicide. It was really tough. Everyone knew that I had lost myself. I still run into people that knew me before he died and they are blown away by the empty shell of a person I have become. Everyone who was once friendly to me has turned away...and I know why. In my depression, I shut them out, and when my health went back downhill, I became a mega B*tch to everyone.
I went to an animal communicator and she did channel him...she channeled him so well that while I was waiting to talk to her, I closed my eyes and could actually feel his breath on my shoulder. I knew without a doubt he was there. When we spoke she told me he had been ready, that he was sorry to have left me, that I was the only person who saw him for an individual rather than just a piece of horseflesh. The things she told me helped, but deep down, nothing helps for long, he's still gone....
-
Last July I lost the only person that mattered to me. He died of cancer. He was my best friend, true love, and soul mate(and yes, he was a horse, not a human). Since then, it's been really hard to even function. I mean, I think the grief has gone kinda beyond the bounds of normal sane grieving...and I wonder if it has taken a toll on my health. I really don't know what to do. I haven't talked to a therapist because prior to his death numerous doctors told me that my love for him was unhealthy and bordering on insanity...but when he's the only friend you have, the only caring anything u have, and he's a lovable perfect ANGEL, what do you expect?
I don't want to hear how unhealthy the emotions are. I know that and I can't fix that. I live everyday just trying to force myself out of bed and I have no one to talk to about it. My parents would like me to go to a psych ward...that was always their way of getting rid of me when they were too busy to worry about being supportive. I truly have no friends...the kids in my area are manipulative and cruel, and I have NVLD (autism spectrum disorder), which makes me a prime target for their taunts. But I don't know what to do anymore. I don't want to lay down and let the grief cause me to give up and die. I mean, god knows I'm lonely enough and sometimes I do wish I had died too, but I lived and I gotta try to make a life work without him. I really do think the grief has become not only an emotional issue but has made me physically sick as well.
Any ideas on what I can do to recover? I know I'll always miss him and it will always feel like half of my soul died, but I've gotta find a way to at least function normally....any ideas would be great....
-
This does sound like an allergic reaction which, of course, you already know. The way you described your lips it reminded me of another poster who was describing how ingesting MSG made her feel. I also wondered when you said Koolaid because of the food dyes. But like you said, each time was different foods.
You also mentioned ham and I started reacting to ham last year. I can only guess it was the nitrites/ates. I now only eat Hormel naturals with no nitrites/ates and no reaction.
I'm just brainstorming here. I'm just wondering if there is more than one thing that can trigger that kind of reaction in you.
hmmm.. msg and nitrites/ates...you might have a point. since the reaction has been kinda random, i will compare next time and see if it still fits...
-
This has happened 3 times in the last few months. the first 2 times happened within a week, then it stopped for about 6 weeks and tonight it happened again. I'm trying to find a cause for it but even my doctor seems stumped.
I get a burning in my throat like heartburn and within seconds, a sudden onset of a bright red rash that starts on the face and BURNS, and travels from face to chest to arms and legs and back. It does not cover my stomach. My face is not itchy but physically burns under the skin and the skins surface. The rest of the rash area itches like crazy and my whole body is covered within 5 minutes or less. Along with the rash comes a horrible cramping in my abdomen, a need to poop, and a severe need to vomit. The symptoms worsen quickly. The rash burning feeling spreads down my body and finally, I feel I have to take a cold shower to stop the burning. Since I am unsure whether an allergy is playing a role, I have taken benedryl all 3 times prior to the shower and washed my hair and body with tea tree oil wash in the shower. I am unsure what the result would be if I just washed with cool water and didn't use benedryl. normally the rash starts going away as soon as I enter the shower but the cramping stays for a few hours, often leaving me doubled in pain for a while.
now here's the odd part.
the first time it happened, I was in the bathroom preparing for a nice romantic bath with the fiance. i had just woken up and taken my morning meds with water (this includes my daily allergy med, zyrtec). I hadn't eaten for a good 12 hours at least and there was no stress at all.
the second time was 3 days later. i had woken up late, rushed around, and barely made it to work. at work, i encountered a hatching egg sack of spiders in my area. the stress was high. I was drinking tea and waiting for an order of potato skins to munch on. I honestly thought I was dying. the "heartburn" was so bad I used my inhalor 4 times in an hour and my mom had to drive me to her house from work. both the first and second times, i was living with my fiance.
now tonight, i am living with the parents again due to finances and actually, its been a nice sort of break from the fiance. i had been up for a while but had eaten little (water, some kool aid, and a few pieces of gluten-free ham with cheese melted on it). I was sitting on my bed beginning to close down my computer for bed when the burning started. I thought, oh its just some heartburn cuz I ate too little. my appetite has been down lately. then it hit suddenly that my face was on fire (not literally) and I needed the bathroom instantly. as i sat there, my upper lip kept burning horribly (most sensitive part of my face) and i couldnt breathe well from the heartburn. thats when i noticed my chest and extremeities were covered in bright red itchy blotches. a quick look in the mirror confirmed it. another "attack". i hadn't taken my zyrtec in a few days (been busy and forgot) so i took it right away, woke mom up so she knew, and popped in the shower, again lathering all over with tea tree oil. the stress level for all of today: none, in fact, i was happy because i had wonderful news today.
so stress doesn;'t fit. location isn't the same either. neither is food (all that matches food wise is that its all gluten-free). nothing makes much sense here and i'm worried. what might be causing these attacks?
-
I did research on addiction as part of a project for school. There are two areas that are triggered from addiction and it normally depends on the individual which area is triggered, or both or none. An example is that cocaine triggers one area, meth the other. Alcohol, cigarettes, marijuana, opiates, all of them trigger one or the other of the areas. No substance has been found to date that triggers both areas. Granted, I am referring only to the mental addiction, not the physical. Some drugs like heroin trip both the mental addiction (again, only one area in the brain, not both) AND they form a physical dependence. But you know what? Bulimia and anorexia also trip one area or another. Ever wonder why some people tend to prefer one substance over another or tend to get addicted to meth but not cocaine? These two areas are the reason. If one person is sensitive only to one area, only the things that trip that area will be addicting to them. If a person is sensitive to neither, they will most likely not be addicted to anything. If both areas are sensitive, that person is likely to be a highly addictive personality. Food, behavior, drugs, pretty much every type of thing that can be done to the body can affect these regions of the brain.
So why not gluten? Why can't gluten, a protein found in FOOD, become a mental addiction the same as cigarettes? I wish I still had those scientific articles saved...
-
I have to give monovie props. The people selling it to me didn't make wild claims, just that it helped them. Well, my mom and I have given my dad 2 bottles total over the last two weeks and he has improved. But honesrtly, lets consider this. My dad is an obese man in his sixties with a horrible diet and beyond sedentary lifestyle. Granted, he had one knee in such extreme pain that he was looking at replacement surgery. He also lost a finger to a wood saw accident and the stump has bothered him ever since.
We gave him the active stuff which has glucosamine. I have LONG known that liquid vitamins were easier to absorb than pills so its no shock that adding some FRUITS to his diet and liquid glucosamine helped him. He now at least walks his own dog and says his knees have made HUGE improvements. His stump is not so much of an annoyance anymore either. Of that, I am glad. But I think if my mom and I got a juicer, liquid glucosamine, and some good fruits and put them together, he would get the same benefits. For the time being, we are just happy he's doing better. Also, as he is diabetic, we are glad his feet look a bit less purply. He is still on his second bottle.
As for Mangosteen, I did buy a small bottle of combined acai berry, goji, noni, and mangosteen juice. They recomended 1 ounce morning and night. I take 1/2 an ounce every morning and it has aided my energy. It tastes awful but if it gives me the energy to live, I will swallow my 1/2 ounce and smile about it. It has not helped any of my other symptoms though. My mom has bought regular acai juice from the local grocery store and she said it did decrease her appetite a bit. She is also obese and has struggled for years wih various programs, the weight stays. She doesn't drink acai regularly but she does seem to have a bit more energy.
In my opinion, antioxidants in general are just great. Regardless of the source or the strength, we should all try to get more in our diet. Maybe my horrible fatigue is from junk in my body that the antioxidants help take care of. I plan to stick with the mixture I'm already on. It's cheap and quality and I take the minimal dose. Why not?
-
Wow... test results cvame back. All my levels were normal except two. My potassium was low. it was 3.7 when it should be 3.8 at minimum (but its always been 3.7). And my vitamin D levels were 33, apparently my doctor wants them at 50. So tomorrow I am going hunting for a supplement (he wrote down the dose for me). And, since I mentioned it before, I should tell you all the blood pregnancy test was negative. Yay!
-
Does the fruit have any real benefits or is it all marketing BS? I have looked at all the reliable science magazines online and none of them mention mangosteen fruits or xanthone antioxidants at all...kinda concerning...
-
He did not refer me to any doctors, but I will ask him next time about that. He did not biopsy the rash at all but he looked at the spots and told me that he has never seen DH or psoriasis act the way this rash has. The rash had begun to heal when he saw it and he said if it wasn't gone on its own or with the cream we would investigate further. So far no new spots!
Apparently the test he ordered that I don't recall included a vitamin D test (i think it was called a complete chem or something?) but they have to send the D test out to california and said it will take a minimum of ten days to recieve the results. They said all of the test results will be sent to them when all the tests are complete. And they will call me when they have the results. That will be February 2nd at the earliest. *waits anxiously* I will post the results as soon as I get them!
-
Okay so my friend dragged me to a meeting last night for a product called Mangosteen. In case you haven't heard of this product, Mangosteen is a fruit that contains tons of the best antioxidants in the world called xanthones, and the company markets it via a distribution pyramid scheme. I was dragged along for two reasons. One, my friend has money saved up but is gullible and wanted my help protecting her from
-
Doctor seemed a bit stumped to me, but he did help some and ordered some tests for more...
The rash is not DH or psoriasis in his opinion. He prescribed a cream, but the rash is going away on its own as well.
He thinks my balance is ear related and told me a few exercises to try. They seem to have helped. (My dad also returned the railings to the stairway finally...that was a 3 week paintjob!)
My energy is no better, but I have begun drinking Acai juice and it has allowed me to stay awake. I am watching for further improvement.
The doc ordered a CBC, thyroid levels, another test I don't remember, and, JUST IN CASE, a pregnancy test. We both agree we don't trust the pill or at home tests. Pregnancy is likely NOT the issue.
He gave me some ideas for my indigestion as well and told me we need to wait for the blood results for more information.
On a lighter note, my older, married friend and I were messing around yesterday (she is pregnant) with a fetal heartbeat monitor and other than hearing her baby's heartbeat (no heartbeat for ME!), we also found out that I have rusty hinges for joints! HAHAHA, actually that's a planned discussion next appointment... Some joints creaked horribly, others sounded like they popped out of place when I moved them. It was a bit scary.
-
Great, I just got sick in school. According to school rules, they sent me home. This indigestion hasnow caused me to throw up! And I'm pretty sure I saw blood in that vomit. I have an appointment at 2:40 with my favorite doctor. I have a list of all the medicines I've taken in the last 4 weeks and my symptoms. And just watch, He will have a simple explanation for it all. He always does. My doctor is a genius.
-
Yes, the candies are dyed. 3 different colors are listed in ingredients. That is a good idea and I will pay close attention to that... on a happier note, the canker sores are FINALLY healing and no new ones have appeared!
-
Jestgar, are what different colors?
-
RiceGuy-I will look into B12 supplements after school today. Kissing the fiance is at present, not a a possible cause. He has been out of town since December 24th. Letters, however, are a great point. I write him daily and the only envelopes available in my house are the one you lick. But, rather than lick them, I've been using a wet washcloth (the taste of the glue makes me want to be ill). Is it possible that just touching the glue, as little as I do, could still cause sucha major reaction?
I did find out last night - I bought some gummy candies that I checked out and are gluten-free. They didn't hurt my sores so much so I ate them at work - Last night at work, the instant one of the gummy candies went down my throat, SEVERE acid reflux came and caused painful burning burp hiccups too. My mom and I both have a list of the ingredients and will be watching closely to see if those ingredients can be narrowed down to one culprit. The company still says the product is gluten-free, we called this morning. But is it possible that whatever the evil ingredient is could also be causing the DH to flare up?
Sidenote: my doctor did tell me numerous times that DH is MAINLY gluten reactive, but he also mentioned that other food allergies can cause it to flare too. He said the 3 biggest food allergies aside from gluten that cause the DH to flare are soy, corn, and cow dairy. Since he is big into the latest research, I trust he may be right.
I'm 100% positive a life without gummy candies would not be bad at all.
-
As a high school student, I will tell you that while school lunch ladies and the dieticians try their very best to be helpful, when I was first diagnosed and still eating school lunch carefully, I got glutened almost every day. CC is a major issue. I now only get items on the lunch menu if they come in packages with their ingredients list on them. It is a real challenge to be different at lunch, but way better than being sick.
-
RiceGuy- My nails are brittle and grow slower than average. I have a biting habit but when I let them grow, they break on their own and someties split in layers.
Roda- Yes, and that post refers to ONE dinner in JULY in which I ate a VERY SMALL portion because his mom and I had not had the celiac talk and that woman scares me. She and I have had the celiac talk and I do not eat dinner at her house anymore. At the present, her son (my beloved fiance) is not even living in her house! So yes, I Glutened myself at her house in JULY. Not since then. When I say I am Gluten free, I am SERIOUS. Especially with canker sores limiting me to apple sauce, unless my parents are sneaking gluten spaghetti noodles in my applesauce, I am gluten-free.
-
gluten-free Crackers! Glutino is AWESOME and one of my favorite brands!
I also discovered that mixing peanut butter and jelly in a bowl and eating it is just as good as a PBand J sandwich. And rolling up most other sandwich ingredients together are just as good too.
But I can't find any decent gluten-free hot dog buns....
-
Okay here's an interesting question. In some other posts, which I forgot I put up, (yes my memory SUCKS) H. Pylori was suggested. Vitamin K has been suggested here. As well as the B Vitamins. Of course, CC has ALWAYS been suggested. But with my lack of eating ability at the present, CC is least likely. Other vitamin deficiencies havebeen suggested by my parents. And when I look up ALL the suggested ideas, they all have one cause in common. ALL say that a systemic candida infection can cause the problems. H. Pylori even thrives in a candida infected system.
I match plenty of candida symptoms...and I even posted about that wondering if I should try the diet. Given that, if candida is causing this stuff, should I start the diet to treat the candida before I start treating the problems? One would think that if candida is an underlying cause, that treating the manifested symptoms alone would not be good enough....input on this idea would be great!
-
Well, after a letter from my teachers, numerous phone calls from my mom and my doctor, and my own personal complaints, the insurance backed down. I am covered for my meds!!!!! And, the pharmacy gave us a 5 day script until everything was settled (they did this last week), and today I finished one of my classes!!!!!!!!! YAY!!!!
Metabolic Syndrome?
in Related Issues & Disorders
Posted
I went to my doctor today and upon reviewing his diagnosis paperwork, I became confused. I know why the diagnosis was added, but the symptoms are the exact opposite of mine. The symptoms of Metabolic Syndrome are high blood pressure (mine is chronicly low), cholesterol problems (mine is PERFECT), obesity (I am only 3-5 pounds above normal weight), and insulin resistence (never been checked for it).
The reason I was diagnosed was because: back in April and May, I lost my car for a full 60 days. I was dead broke and so I couldn't afford anything to eat while walking everywhere. I pretty much lived off one meal a day and water and walked 10 miles or more per day. But I gained 21 pounds in the first 30 days, all in the stomach area. I was fatigued all of the time but kept pushing myself. The only way I got my weight down was by adding metformin ER to my meal each day. It also got my energy back. My doctor told me that I wasn't digesting sugars. basically they would sit in my stomach and turn to fat without being used as energy first. That's when the "Metabolic syndrome" diagnosis was added.
But I dont understand. How can I have this syndrome when my symptoms are the exact opposite?