Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity
  • entries
  • comments
  • views

About this blog

Probably boring once I figure out how to do this

Entries in this blog

Today is a good day. Some of my energy has returned and I have been able to clear some things off of my desk. I have gotten about a week behind on things, due to the severe exhaustion I have been having. Then I took a bath in my deep whirlpool tub. It felt so great and I really needed the jets on my poor spine. Tonight my sweetie (husband) and I are going to Buffalo Wild Wings for dinner. I am really looking forward to that. Tuesday I see the specialist about my vision. If he has no answers, then I will see a Neuro-Optomologist that also is suppose to know Celiac Disease. My GP found him for me. I hope someone figures this problem out before it gets impossible for me to drive. I pray often for a good resolution to the problem. I can't mention my Morphia S. anymore as my posting keeps going to Google. I would someday like to post a photo, but only when I move far down the line for that particular disease. I hope the energy keeps improving.
I cannot believe how dumb I can be at times. I noticed AGAIN that the next to last posting was not published and so I click on the mouse and publish it. Now my last blog is further down the line. I think I did this once before. I hate when I do something like this without thinking it through.

My vision has been really bad on and off today. When it is a little better, I then pick up the book I am reading and hold it about 6 to 8 inches from my face. But at least I can read. Yesterday morning I again, googled Morphia Scleroderma looking for information on eyes and I could not find anything. I then put in Morphia Scleroderma eyes and then some links came up. What I read really upset me. Enough that I did call my Dermatolgist who is an expert in this disease and I see him on the 21st. It said on one link I read that the vision problems do not happen with Morphia Scleroderma, but only with Systemic. It said there were two types of Systemic - one is the one that turns your body to stone and the other systemic affects the heart, kidneys, eyes, mouth and vaginal. I am praying to God that my Morphia has not gone into Systemic. You do so much trying to get well and then another problem crops up. I am really sick of the problems as I am sure all Celiacs are.

I saw my GP this past Tuesday and my kidney tests came back normal. So, I am praying that that means this vision thing could not be Systemic Scleroderma.

It seems I pray a lot. I hope God is not tired of hearing from me.
Yesterday was kind of a cruddy day. I did some errands in the morning and on the way home I noticed that I could not see the signs very well. And when I closed my left eye, my right eye vision was all blurred. I got home and my husband said to call the eye doctor. They wanted me in within 30 minutes which really upset me. They were concerned about the possiblility of a detached retina. I had had one in my left eye in the late 60's or early 70's (what does my memory know LOL) and I can tell you I never want to repeat that surgery again as it is probably the most painful I have ever expierenced. They had just done laser surgery last Nov. for a hole in the retina in the left eye. But, this is my good eye. I am a heavy reader. Anyway, it was not the retina, but my dry eyes due to the Morphia Scleroderma. I guess it got really bad. Now there is that new RX that they show on TV and he gave me a RX for that. He said it would probably be about 2 months before I notice improvement. And I was to see my Sclerderma doctor. Right now, I stare, squint and lean into the computer to read this as I type. Late afternoon, I decided to google Morphia Scleroderma and read up on it as I had not read the sites since the day of the initial diagnosis (1 1/2 Years ago). The first guy who had done the biopsies had said that he had thought it was going into systemic. We knew someone with that one and after reading about it on the web, I was too distraught to read anymore. But, the specialist I was sent to, said it was not going into systemic and I just never went back to check on the disease anymore. I was doing enough to cope with the celiac disease diet and trying to get well. Anyway, I put in Morphia Scleroderma on google and up comes 1-10 of 1400. So, I start clicking on each one in order and reading. When I got to number 10, it said and then a partial paragraph. When I saw the Celiac, I thought "that this is so cool that they know you can get Scleroderma from having Celiac". Then I start reading the partial paragraph and I am thinking "boy, this sounds familiar DUH. I click on it and there is my name and my cactus. I have no idea how I got on there or how I got to be number 10. But, when I showed my husband this morning, I had moved to number 7. I was really thinking seriously about putting my photo in place of the cactus, but after the google thing, there is no way I am going to have my photo googled. I told Canadian Karen that at least I got us some attention with the Scleroderma people. B) The shades are because I am now a celebrity. :blink: :lol: This afternoon I have been having brain fog and I know I have not been glutened. But, I went to the store to get Pizza and on the way there I could not remember how to cook it and what I usually put it on. On the way home, I remembered that I had two pizza pans. I just hate it when my brain goes into such hibernation. If there are spelling errors, I am sorry, but it really is hard to check for errors with my vision problems. I wish there was spell check on this.
I guess it is time to add to my blog. I almost feel that I am obligated to do this for myself. So, I can look back and see where I was and where I am now. I am still fighting depression over the lack of energy. I have a doctor appointment next Monday for that specific thing. I don't want to go on anti-depressents, if they are going to make me into a bigger slug then I am. I am under a great deal of stress with our almost 18 granddaughter (who lives with us) and don't know what I can do to help her deal with her anger. Tomorrow morning I make a short presentation to a local Denny's wait staff on how to listen to Celiac's. I did a 3 page handout to give each person so that they will hopefully better understand the whole issue, including cross contamination. Hopefully the manager will explain this all to the kitchen staff and to others who don't work that shift. That is why I made extra copies. I am still reading a lot, but find that after I have read for while, that my eyes don't readjust for distance and everything stays blurry. Tonight we are having meat loaf that I copied off of this forum. It is really great.


Today is a really bad day for the exhaustion, even with the liquid vitamins. And now I am in a very deep emotional slump. I have been raining tears continuely for a long time today. Today and too many other days this past year, I wonder why I was so happy that they diagnosed celiac disease. Another two weeks and I would have died. I wish that I had. I really don't mind the diet and it really is not that hard once you get the hang of it. But, my quality of life really sucks. When we moved here 4 years ago, we were so busy building a home and getting settled, that I only had time to make a couple of friends. And they did not turn out to be very good friends as my diet is so restrictive that they don't want to be bothered to invite us over for dinner, etc. We do meet one couple for dinner now and then, but since the diagnosis, we have not again been invited to eat at their home. We had a very few casual dinners in the last home, after the diagnosis (and a partial recovery), but because of the tiredness we are still not settled enough for entertaining in this home. When they finally get our patio fixed, I am hoping to have a barbecue. I always have hopes of going away for a few days, but I would not have the energy to pack a bag. This is so much worse then I imagined. I used to be so strong and a fighter over all my illnesses. I am just not me anymore. And I don't like who I have become. If this is all I have for the rest of my life, then I wish it was over. No, I won't do anything, because it would destroy my husband. But, going to the grocery store, Whole Foods, reading books and out to dinner three times a month is not a life. I am sorry to be so negative.

Vitamin Testing Results

I just found out that all my vitamin levels are in the normal range. I was really hoping that something was wrong. It has been over a year and a half since my diagnosis and I have been gluten-free since the day of the test for Celiac. Yes, I have had accidents and twice I delibertly ate gluten dinners. That was several months back for the dinners. I am so tired of the exhaustion and now I find out that I am still recovering. When do I fully recover? The doctors' don't think I will as too much damage was done. But, I wasn't greedy - I just wanted a little more energy so that my qulaity of life would improve. I again started the liquid vitamin yesterday. I am only taking 1/2 of the dosage and my hives and rash do not appear to be getting worse. So, hopefully my energy will improve somewhat.I made the pizza pockets that someone gave the recipe for and my husband and I found them fantastic. I think next time, that I will made two batches and freeze them uncooked and see how that goes. They are out of Chebe bread, so I would not think that would be a problem. I also made the Strawberry muffins and we are enjoying them also. I froze a few for me to use as a breakfast meal. I have found so many new products on this website and it has really made it great for me to enjoy snacks and new dinner ideas.

Rash, Itching, Welts

I have spent the last seven days with a rash that itches unbelievable. When I can't stand the itching anymore, I then scratch like my life depends on well I can scratch LOL. Then I get the welts where I have scratched. Because this happened two days after I started this high protein, vitamin drink, I thought maybe the drink caused it and so I quit the drink. I know that the drink is gluten-free as I talked to someone in their research and development department. I don't know if my vitamins are so low that the impact of all these vitamins caused this. I don't even know if a rash could be caused by low vitamins and malabortion. I had blood tests (nine vials) 11 days ago and my doctor has not received the results. On Thursday they were still trying to get the results. The tests were for vitamins in my body. The exhaustion is back in full swing and today I am not able to do anything but be a vegetable. The rash and itching has improved about 40% and tomorrow morning I am going to try 1/2 of the vitamin dose that I am suppose to take. I will then see what happens. I have so many things THAT I HAVE to do and all I do is sleep or read. I absolutely hate this part of my lengthy recovering. Those liquid vitamins were so noticable in the increase of my energy. It was such a great feeling to feel like I could get things done and then the rug was pulled out. I am just venting. :(
Three weeks ago I ate two cookies with gluten, thinking since they were Midol, they were gluten free. No wonder they were so good. LOL. Later discovered the mistake before I ate anymore. Four days later I accidently got cross contaminated. Needless to say I have not felt good since then. Start to feel better and then I am sick again. Yesterday I went to the lab and had nine vials of blood drawn to check out all of the vitamins. Came home and slept for almost three hours. I just want the exhaustion to go away. Went out to dinner with friends last night at PF Chang's and the food was wonderful as usual. Had a steamed salmon (gluten-free) with plenty of wonderful gluten-free seasoning and gluten-free soy. Also had a combination fried rice plate, but with only the chicken and shrimp, as the other items had already been seasoned with gluten soy sauce. I have never gotten sick there and hope I don't jinx it by saying that. The waiters have all been very knowledgable. I've gotten a few things done in the past two weeks, but am so far behind with everything. I would just like to have enough energy to do more then read a book. I also want to stop taking the High Protein Ensure as I am allergic to the corn and soy and my face has a rash on it. I bought a new product that was reccomended for energy that has no wheat, soy, corn, etc. But it has some items listed that scare me and so I emailed the company to ask about them. No one has gotten back to me and I hope they do soon. There was no phone number to call. It is called Nature's Plus Source of Life liquid. The two items I am concerned about are Natural flavors and young barley leaf. I know we can't have barley, but is the leaf different?


The bad heartburn started yesterday afternoon and we thought that I had accidently got some of my husbands bread crumbs when I made my sandwich. So, we have now designated a counter just for him (his idea). Then we decided to have two dish towels - one on his counter and one on mine. This afternoon the heart burn has gotten worse and I again have a temper, plus extra trips to the bathroom. I only get the temper when I get gluten. So, a few minutes ago I went to get a couple of Midol cookies and read the label as my dog has allergies and I wanted to see if I could give her a couple of pieces. The first ingredient is Wheat. I had read that someone liked Midol cookies and so I bought the Vanilla flavor. WRONG move. I should have read each type of cookie as not all are gluten-free. I had a couple of these cookies a couple of days ago and there is my source of gluten. Talk about being stupid. I just hate when you are so careful and then you let your guard down and do something stupid - like not reading a label. :(

Tests Results

My husband arrived home Sunday and it was so great to have him home. The only thing is that he arrived home with his ankles swollen worse then ever. But, this time he agreed to see a doctor. I had my CT scan on Monday and so I set up a doctor appointment for both of us on Thursday - to get my results and have him checked out.My tests came back normal - NO CANCER!!! :) :) . My blood work was normal with no anemia. My exhaustion must mean I am still recovering. The doctor said that my weight loss is from stress. We moved the end of May and have had MANY problems that the builder has been taking care of and thank goodness we are almost at the end of that list. He said also having our 17 year old granddaughter living with us has been stressful for me. And having her Mother live in the area (our daughter) is also additional stress. A friend noticed that my weight loss started when my granddaughter got lost in the desert on a 114 degree day. Her cell went dead as she was telling me where they were at and I had to call in search and rescue. She is fine, but I was so worried and hysterical until she walked out of the desert. I guess it was a culmination of everything. So, my relaxing in the area we set aside in the master bedroom is going to take priority in my life. My husband's health is a different matter. He had chest X-Rays today to rule out congestive heart failure (which the doctor does not think it is). He has blood tests on Monday and Monday he starts a rigid dose of water pills that will prevent him from leaving the house for 7 days. Then he resees the doctor the following Monday. He also has to see a vascular surgeon in a couple of weeks. This doctor said that if it is what he thinks it is that it can be corrected. But, if he had let this go on, he would have lost his legs. For over 20 years I have had him into a couple of doctors and all they gave him was a few water pills. This time was the worst I have seen. He looked like he had Elephantitis. It was unbelievable. Thank goodness it got that bad or I would not have been able to get him back to a doctor. I could not believe that he went and had the chest X-Rays today without me having to drag him. I am also changing my hand soap and face soap, etc. My lipstick is already gluten free (Avon). But, I am having a hard time trying to find a gluten-free mouthwash.I went to Whole Foods on Wednesday after I had my tooth repaired (broke off). I had a wonderful list of new items that I have acquired on this site. I tried Tinkyada Pasta for the first time and that beats the others I have tried. I made a cold pasta salad to go with the gluten-free cooked chicken I got at Whole Foods. My husband even liked it. Now if I could just find a few more of the items that Whole Foods did not have. But, I will probably find they are East Coast only. I am going to check out the internet for those things. B)

Can't Sleep

I seem to be unable to get to sleep tonight. My husband is coming home tomorrow and I am so excited to see him after his being gone 6 weeks. He is in New Mexico tonight and will be here sometime early afternoon. Today is his 65th birthday and he was going to ride through Durango, Colorado to celebrate but he hit rain on his way up the mountains. So, he turned around and took to the highway and just headed the fastest way into New Mexico. I am sorry that his birthday was not what he hoped. It is a place that he has wanted to see, because one of his Bike mags said it was a beautiful trip. He said there would be another time. The stomach pains finally went away today and I hope they stay gone. I am so sick of getting blood drawn for whatever doctor. They all want different tests. My veins over my lifetime have left me and they have to use a butterfly needle on the side of my wrist. If they need lots of blood, they have had to go into the foot for it - that is really no fun :angry: . I have type O negative and I cannot be a doner as the blood gets bruised using a butterfly. I have had so many body tests, CT scans, MRI's and what have you that sometime you want to say enough is enough. And yet, when something is wrong, we still tell our doctors, knowing that they are going to order more tests. I am glad, that at least, my fighting for a diagnosis for Celiac Sprue Disease has been over for eighteen months. And hopefully the blood tests yesterday and the CT scan on Monday will only show a minor problem or no problem at all. Just a long time of recovering.

Todays Lab Tests

This morning I had my blood work done after fasting for eight hours. They will also check my white and red cells. Then I went to the place where I will have the CT scan of my abdomen and pulvis (sp) on Monday. Picked up the Barium junk I have to drink before the test and asked if it was gluten free. They checked and still were not sure. So, I am hoping it is gluten-free. If it is not, I suppose there is nothing I can do about that. I don't feel well this morning and the stomach pains I started to get a couple of days ago, seem to be getting more frequent. I just don't feel like doing my blog right now.
After reading Lindylynns blog about eating in NYC, I wish we had retired there. Of course I hate the humidity, but the eating out sounds great. Coulter has talked about the same things in the dining section. NYC also has wonderful plays to go to. I love the size of the theaters - small. I am also like Mosaics' blog, after you tell about the illness what do you write about. So, I will do what she did and tell you a little about me.I have been married to a wonderful man (really he is) for 42 years. Yes, the same man. LOL He took such good care of me when I became ill and through my recovery. He learned how to do dishes, cook (somewhat), laundry, grocery shopping and never complained. Not even once. Before he retired he worked terribly long hours building and rebuilding bridges in the Chicago area. So, I was the one who maintained the homefront. The last two years he has become, maybe not proficient, but capable in the home.I had a Devon Rex cat before I became ill. Even though I knew I was allergic to cats, I still had one as I absolutely have to have a cuddly pet. Well, shortly before the diagnosis ALL of my allergies went through the roof and the cat one really did. I ended up on big oxygen tanks as my asthma went totally out of kilter. So, after the diagnosis, we had to find a good home for her and then we dedandered the TOTAL house. My husband had previously said "no more dogs". Four months after the diagnosis, I got a cute little black tiny toy poodle from Calif. who turned out to be more toy then tiny toy. She weighs 9 pounds (suppose to have been 6 to 6 1/2) and is a real sweetheart. She just loves my husband, much to his chagrin. He really likes her, but does not want to admit it. He has been gone for 5 weeks on his Boss Hoss Trike and is leaving Illinois this morning for home. Bitsy (the dog) and I both miss him. Someone said how could I let him go for so long? Really lots of people say that. He did not take his Trike trip last year because he was afraid to leave me for more then 1/2 day. And honestly, isn't that what love is - allowing the person some freedom. He loves his Trike and it is such a tension reliever for him. He took all the red roads this trip and visited friends and some family. He had a great time. His Trike has a 350 Corvette fuel injected engine and the back click (?) is shaped like an older corvette. It is black with the American Flag painted on the back. You can see Boss Hoss on the web, but they stopped making the Corvette click. There is room on the back for me, but I get too tired to ride on it. We did go up to Sedona 13 months ago when I first started to recover. He made us stop 3 times for me to rest on the way up. What a worry wart he was. But, the red rocks up there are just beautiful. I want to get more energy so we can do some more mini trips on the Trike.
I was going to address my recovery time, after the diagnosis. But, yesterday was a bad time for me emotionally, because of the doctor appointment today. My recovery is still ongoing after being diagnosed early February of 2004. As soon as I went gluten-free, I noticed a mark improvment right away and thought it would keep going at that pace. It did not. They said I would gain some of my weight back and I did not. I am still the size I was when I was diagnosed. I am probably at 50 % or so into my recovery and my doctor and I discussed this at my last appointment two weeks ago. I will probably not have a full recovery. I CAN live with that, if I would just have a little more energy. I would like to have a little better quality of life. It REALLY is a good thing, that I love to read as my energy does not allow much else. At today's appointment, I was suppose to have put on two pounds in two weeks. I starting dropping weight again a couple of months ago. I also started to have sharp rectal pains, but not often enough to remember to tell the doctor (again, that darn foggy brain in the paper sack)LOL. I started to count calories up for the first time in my life. I have been eating 2500+ calories a day and gained nothing at today's weigh in. But, at least I did not lose any. I have been drinking 2 to 3 Ensure every day and I am allergic to the soy and corn in them, but thought my asthma would just have to handle it. Also drank two Frappachino's every day and I am allergic to the milk. I told him today that I have to quit the Fraps and go down to one Ensure as the asthma and itching have been real bad. So, after today, I will probably start dropping some weight again. Also, told him about the rectal pains - this time. He had already told me last time - no weight gain - then a Cat scan. So today he ordered a Cat scan of the abdomen and pulvic (sp) area. Plus he has ordered complete blood works, my thyroid, white and red blood cells. He also ordered a Helicobacter Rylori stool test for bacteria. He is covering all the bases for the exhaustion and checking for Colon Cancer for the weight loss. If the Cat scan shows anything, then I have to have a Colonoscopy. I just hate those things. I can't drink the stuff as I throw it up and so I have to prepare the old fashion way. But, at least today is over and my emotions are back on an even keel (?). Do you know I used to be a great speller before I got ill and now I have a heck of a time. I wish Scott would put spell check in, Hee Hee.It is only 7:15 but I think I am going to go to bed soon.Oh! PLEASE remember that my length of recovery is NOT the norm I certainly do not want to scare any newbies. I was really far gone before my diagnosis and I also have my age working against me.

Diagnosis & How We Got There

Well, I just had a nice long nap and I will try and finish this. When I went to the doctor's and stated how I was losing weight, they ran the typical blood tests that came back negative. Thereafter I would go in with more of a weight loss and be greeted with the same statement from the nurse - EVERY TIME. "I don't know why you are here - You Look Great". Needless to say my blood pressure would rise. And I would also say the same thing each time. " I am not dieting, I am not bulimic and I am not anorexic. I am losing weight". In between each visit I would search the web for answers and go into the doctors and ask for this test or that test. They would all come back negative. I kept dropping weight and starting in November of 2003, I had become weak enough that I spent more and more of my time in bed. In December we had no Christmas for the first time in my life. It has always been my favorite holiday and all I got done was a wreath on the door so my neighbors would not think I was Bah Humbugging them LOL. Also starting in November, the D started bigtime. They gave me lomotil and by December I was taking 100 a week to no avail. By the last week in January of 2004 I was taking 5 hour naps, washing my hair once a week and getting in the shower twice weekly. Seldom even brushed my teeth and stopped eatting. I had no idea what I weighed as I was too weak to get on the scale. By this time, I would not let my family visit me and see what I had become. I did not know that by that time I had lost over 50 pounds and had become a size 8. The last week I had a colonoscopy, but was so weak that I forgot to take the pills and so the exam was not a good one. My big husband literally bagged the doctor who had done the exam to give us direction on where to go for answers. He said "I don't see anything wrong, she looks Good" At least he did not say "She looks Great". Asked for a diabetes test and it was negative. Then I started getting dehydrated. Could not keep Petialite in me and threw up plain water. By the last Thursday I was in the fetal position. We decided maybe the emergency room could provide answers. The short story for that is a nighmare. The ambulance techs decided I just wanted a ride to the hospital to cut through the waiting time and so they would not cover me with a blanket (I was skinny and cold) and told the triage nurse that I was having an anxiety attack which was causing me to throw up, etc. So, after sitting in a sling type wheelchair for over 3 hours, I asked the waiting room nurse "how much longer". She told me I was at the bottom of the list and EVERYONE came before me. I asked to sign my self out and that I was going to die at home, not sitting there. By this time, I had had no fluids of ANY sort - remember I am have an anxiety attack. And I was sitting on just bone in that sling wheelchair. Silent tears had been rolling down my face for sometime. I really did go home to die. There were no more avenues and my husband and I knew it was just a matter of days. The pain became so intense on the last Saturday that I was begging God to please take me. Dehydration is not a painless way to go. My husband then begged me to fight. Because of him I did not give up. He kept begging me to again try the petialite. By Saturday I could keep a swallow or two in me without throwing it up. I think he bought every flavor they made, hoping that one flavor would work. By Sunday night I had been able to keep about a cup in me for the day. Monday, he called the GP and tried to get me in. They said they would squeeze me in on Tuesday. Monday, I kept about 2 cups in me and tried a piece of dry toast which I threw up. Tuesday he went to the doctors with me - needless to say I was not driving and had not done so in a couple of months. It took hours before this hypochondriac was seen. LOL. While the doctor was trying to think of a polite way to tell me to see a shrink, my husband told him I had never had an anxiety attack in my life. The doctor was also leaning forward and looking at my MANY blood marks over both arms. I then reached behind my back to scratch and the rest is history. Somehow the scratch triggered a memory for him and as he tells all his celiac disease patients "A lightbulb went off". He said "I know what you have, why didn't think of this sooner". He had me go home and start reading up on Ciliac Sprue and the next day I had the blood test. I started going gluten-free free the same day. I found out the test results two weeks later where my GP said he had not thought of celiac disease since his medical exam in the 60's. Even in two weeks I felt so much better and I thought that my improvement would continue at the same pace. Wrong and I will address that later. My GP told me that I was probably two weeks away from no recovery. When I asked how long would my recovery take, he said "If I was at 50% in a year" he would be extremely happy. I did not make that percentage. My skin is still so thin that any bad bump causes it to bleed. I have to say that he has been a great doctor to me since then and is always concerned over me. He REALLY cares as does his staff. He now has diagnosed over 50 people since me. I am tired again and think I should eat something. Night Night to all the East Coast. LOL
THIS WAS REALLY WRITTEN ON SATURDAY, BUT I DID NOT FIGURE OUT HOW TO ENTER IT UNTIL TODAY. THIS IS BLOG NUMBER ONE. I absolutely have NO idea what I am doing. I am totally computer illiterate. I sold on eBay for several years and figured out the basics, but this is Greek to me. What I hope to do is write down the LOOOOONG path to my diagnosis. After all I am 63 and probably have both feet on two bannana peels. LOL. I really don't have many hobbies anymore as my lack of energy put most in limbo. I do love to read mysteries and I have a book in my hand several times a day. We moved the beginning of June to a townhome. We downsized from a larger home with many outside amenities that I no longer had the energy to use. I also wanted my husband of 42 years to be in a smaller place, in case my recovery was not too great. I am still getting us settled and am now down to the nitty gritty of finding room for the small items. Two great friends did most of the getting settled, even to hanging my photos on the walls. My hobbies used to be photography, traveling, crafts and some needlework. Photography was my favorite and our walls are covered with photos of places we have been. Someone asked my husband last year if he wished we would have saved more of our money instead of going the places we did. He looked at me and smiled and said NO, that if we had waited until now, we would never had been able to do all those things together. My days of travel are over, but we both have great memories. Since my brain is still wrapped in the cardboard box brain fog, I will misspell words, won't use paragraphs and be generally lucky to make any sense at all. Tomorrow I will start the health history and sometimes veer off in another direction all together. I hope you don't find this too too boring. Armetta

Health History

I was born with both lungs collapsed and had pneumonia several times in childhood, then advanced to a lifetime of bouts of bronchitis. Because I was a skinny child, my parents decided that pure cream would put weight on me, little knowing that fat cells are formed in the first two years of life. Boy, do I have the fat cells LOL. The blister rash on my hands started as a child which I inherited from my Dad. Sometimes the blisters and itch would last just a week and then leave. I was always sick with something or another. My Dad moved a lot for Boeing and worked on missles. So, I attended 17 schools, including a short time at College. During High School, my Dad was diagnosed with Porphyria and became a test subject at the University of Washington. There is no doubt that I got this disease from him. He died at age 52, undiagnosed with celiac disease. He had the projectile vomiting and sitting on the toilet at the same time. In High School I got the reputation of being a hypocondriac which I carried with me all through life. That stigma made me handle the pain longer then most people would have. I used to get sick in my senior year and would go home and then within several hours the pain would leave. We moved near to Cape Canaveral when I was 19 and the pain started one day at a new job I had just gotten. I just kept telling myself it was all in my head. When I got home I would not let my parents call a doctor as I had no insurance. Two days later, my Dad called a doctor, who ACTUALLY came to the house. Sure was different then. LOL They operated the next day and took out my right ovary, appendix and two oranges and one grapefruit - all were precancerous. There were many hospital stays and some surgery's over the next many years.25+ years ago I was dianosed with Fibrositis, now called Fibromyalgia. By, the way, a gluten-free diet took most of the pain away and that has been a nice side affect of this diet. I also have Osteoarthritis and had two artifical joints put in my large toes - also many years ago. I was diagnosed with hypo thyroid and IBS. Had surgeries for detached retina (bad fall down some stairs), torn rotater cuff (raquet ball), same fall detached my Uturus and that had to be reattached. Had a rare pneumonia five years ago that required lung surgery and a minor heart problem showed up during the same time. Of course diagnosed with Reflux and severe heart burn. Took SO many pills a day for those two alone. A few other minor surgeries along the way. At my age, I can't remember yesterday, let alone that many years. Also have asthma and it sometimes becomes severe with my food allergies and food intolerance. Use a nebulizer several times a day.Many years ago, I started getting what I would call "mini flu's". They could last several hours or just a day. I would throw up until the dry heaves would start. Nauseated and many times D time in the bathroom. Also had to live with the C bathroom problem. The throwing up was the worst and the most frequent. I had so many barium tests and all they did was reinforce the hypochondriac diagnosis (quietly, of course). Had MRI's and CAT scans during those years. Of course they threw the label at me of IBS. We used to go out to dinner locally at that time and of course in a small town you know the owner, etc. of the restaurent your eating at. Of, course I would be stupid and order rich food and then proceed to go upstairs to the bathroom and lose it all. Come back to the table, where my husband would have my coffee waiting. Bob (the owner) would always ask what it was about his cooking that made me do that. LOL.I also had a horrible temper during all those years. Since I have been gluten-free, my temper is almost gone. The only time I lose it is when a problem arises when I am very tired. It is very short duration and just very bad rudeness.Over two years ago, I started to drop weight. This for someone who spent her adult life going from a size 14 to an 18 and really working at it to even stay in that range. Used a treadmill 5 days a week and had an 8' long weight system. Part of the basement was set up for a gym for me (this was before retirement to Arizona).So, when the weight starting to come off by leaps and bounds - anything over 5 pounds a month without hard work - was leaps and bounds, I decided a doctor was in order. Here comes the frustration.(To be continued) I am really tired.