Health Discussions

The two health issues that have impacted my life are Celiac Disease and RSD (now called Complex Regional Pain Syndrome).

I was diagnosed with Celiac Disease six years ago. I had never heard of Celiac when I was diagnosed. Some of the symptoms I had were abdominal pain, weight loss, etc. People have different symptoms it just varies in each person. People with Celiac Disease HAVE to go on a Gluten/Wheat-Free diet. Two good websites are http://www.celiac.com/ and http://www.celiac.org/.

Now, I will give you the short version how I got Complex Regional Pain Syndrome (CRPS). Two years ago, I was in the hospital with a severe migraine headache. I was injuried with an IV needle which caused nerve damage. Then the nerve damaged turned into chronic pain. CRPS is a chronic neurological syndrome that causes severe and relentless pain. It affects between 200,000 and 1.2 million Americans. I did a review on this syndrome - if you are interested - http://www.viewpoints.com/RSDSA-Reflex-Sympathetic-Dystrophy-Syndrome-Association-review-3bbd4.

Thank you Jo for starting this thread. Great idea!

I also have symptoms of celiac (pronounced like "silly-ack") disease. I've never been diagnosed because I'd have to go on a regular diet for about two months, have an endoscopy with biopsies, and the only treatment for celiac disease at this point is a gluten-free diet.

I decided to try this diet after having two children with severe colic--it seemed as if they cried all the time except when they ate or slept--and they seemed to never sleep. After trying the diet, we had improvement on quite a few symptoms, including abdominal pain, bloating, frequent stools (as many as 9/day), gas, low iron levels, frequent stys, mouth ulcers, bright green stools, frequent sinus infections, and the girls began to sleep quite a bit better and did not cry nearly as often. I also have had some improvement in joint pain that may be the result of lupus. (I make a terrible patient because I really don't like to have tests done unless I can see that the benefits outweigh the risks and cost.)

The only chronic condition that I have been diagnosed with is PVT (paroxysmal ventricular tachycardia), which is a heart rhythm that has the potential to cause a lot of problems, but my heart rarely ever flares up now and I'm not on any treatment for it. When it happens, it feels like someone is blowing a pinwheel in my chest (doesn't hurt but sometimes gets tight).

Thanks, Jo, for all the information on Sjogren's Syndrome and to the others who have posted on medical conditions. I hope that discussions such as these may be able to help people who are viewing.

bkovacs said…
I hate to say this, but I'm in pretty good shape. I have been treated for hypertension for 25 years but it's under control with medication. I have a herniated disk in my back that always lets me know is there, as well as a pinched nerve in my neck that I never completely recovered from 15 years ago. However, they scarcely slow me down. My hearing is not what it used to be, though.

Other than that, I'm in good shape and can do most anything I want to do. Lucky, I guess, but I've always taken pretty good care of myself -- no smoking, no drinking, no drugs, no nutty driving or wild stunts. Healthy, if boring.

--Bob

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AnnieMetalGirl said…
I have DDD, spondylosis, scoliosis, osteoporosis, osteoarthritis, radicupathy, neuropathy, 5 back surgeries.  I have diabetes, hyothyroid, Intersistial Cystitis, fibromyalgia and chronic fatigue syndrome.  I may have more but fibro fog won't let me remember ;-)

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Katrena said…

AnnieMetalGirl said…
I have DDD, spondylosis, scoliosis, osteoporosis, osteoarthritis, radicupathy, neuropathy, 5 back surgeries.  I have diabetes, hyothyroid, Intersistial Cystitis, fibromyalgia and chronic fatigue syndrome.  I may have more but fibro fog won't let me remember ;-)

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And you still have a sense of humor? I'm impressed.

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Katrena said…

AnnieMetalGirl said…
I have DDD, spondylosis, scoliosis, osteoporosis, osteoarthritis, radicupathy, neuropathy, 5 back surgeries.  I have diabetes, hyothyroid, Intersistial Cystitis, fibromyalgia and chronic fatigue syndrome.  I may have more but fibro fog won't let me remember ;-)

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And you still have a sense of humor? I'm impressed.

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dreamer07 said…
Earlier in the year i found out i have discs in my neck that press on my spinal cord. It sure limits me to daily activities and I am not one to be still. I am enjoying the not working though.I do have scoliosis too. I also have arthritis of the knee,mild carpul tunnel in my right wrist and the nerves on the left side of my head give me fits and that really sets things off. My right knee makes even walking let alone standing very hard at times. As for my spine,even just sitting down puts pressure on it and that really scared me a few weeks ago. It could be worse so I am thankful this is all I have to deal with. At least I dont get migraines too often. Alot of this started surfacing over a year ago when I passed out supposedly from the heat. Alot of friends say it was a stroke and the  paramedic said heart attack but I am still hanging in there and I hope everyone else will too.I am waiting to win my permanent disability case so I can see a spine specialist at UCSF.They got such good doctors there.

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I have Attention Deficit Hyperactivity Disorder (ADHD), Generalized Anxiety Disorder (GAD), and was diagnosed a few years ago with anorexia nervosa. A very complex set of disorders, but the GAD and eating disorder were likely the result of being diagnosed later in life with ADHD. Treatment has been difficult, but I am recovering from anorexia nervosa through Cognitive Behavioral Therapy. Also, I take medication for both ADHD and anxiety. 

Thank you all for sharing your health stories. I wish you all the best! Please don't hesitate to message me if you have any questions about my experiences. 

Let me say "Thank You" all for sharing health issues. I'm sure it might help someone who doesn't know what is going on with them. We all learn from each other and talking. It does take a sense of "Humor", they say laughter is the best kind of medicine. In 2007 April 1st no less, someone was playing a mean trick with me, being April fool's day. That's how I look at it. My liver totally shut down, which in turn caused blood to back up and cause pressure in both directions. So I was vomiting blood and having bowel movements all blood. Don't ask me how I manage to make it up our stairs and wake my husband and say "Honey can you take me to the ER" and come back downstairs. He was in deep sleep and said "can you give me a minute?" I said sure. Well when he came down, it happened to me again. I'm thinking to myself for him to call EMS, because I didn't want to have to clean the car when I got home (just like a mom to feel and think about that). He said once he seen the toilet he knew he was calling them. Well when they arrived I barely had a pulse. They took me to one hospital gave me 7 pints of blood, I would say as fast as they were putting the blood in, the faster it was coming out. And I was asking for a bigger bed pan. I looked at the head nurse and asked her if "I was going to die" she never did answer me. I do remember her working very, very hard on me. She was not giving up! I want to say her name was Jill. And "Thank You"!! Here veins burst in my stomach, and that's why I was bleeding so much. This Hospital didn't spealize in this area, so they transported me to another-their sister Hospital. But before that they knocked me out put the tube down my throat, one in my nose, and a central in my groin that one I was awake for hurt like no tomorrow. (I was in ICU for 6 days). They said it usually happens in someone who was a HEAVY drinker for over 20 years. Well, that wasn't me. Sure I enjoyed cocktails but a Heavy drinker I think not. Reminds me of the type of cancer my Dad had, they said the reasoning for his was drinking and too much Chinese food. One he never drank-just Coffee, and two he didn't eat Chinese food. But the doctors told him it was typically seen in that type of cancer. Who knows why something happen to people, I feel everything happens for a reason. Whether to educate, understand that just about everyone has problems. You haven't walked in my shoes, and I haven't walked in yours. Some learn more paitence, and compassion. A greater sense of being that there must be some purpose why some survive and other's don't. I'm still here, my sister said "God wasn't finished with me yet" what my purpose is, I'm not sure he hasn't told me, and I haven't figured it out. I know I care too deeply, compasionately, always helping other's, trying to put smiles on faces and make people laugh. So there isn't a name for my condition, I am not suppose to do all the things I use to do. Which I'm sure other's understand. I plead the 5th alot with my doctors. If it's part of my job, or if I am helping someone I do not let that stop me. When it's my time, it will be. Sorry for the rambling on. Everyone have a "Fantabulous Day"!

I have bipolar disorder. It's pretty much impossible to control if I am under a lot of stress. I have generalized anxiety disorder, too, but again, the less stress I have, the less it bothers me. Usually, I don't like to talk about it, because many people i run into say insensitive things to me ("I wish I could have a couple of 'happy' days like that once in a while!"), which are mostly not their fault, because talking about mental illnesses can make people uncomfortable so they will just say anything. But when I get comments about how if I prayed, Satan would lose hold of me, or I am throwing myself a 'pity party,' or how everything today is called an "illness." It makes me not want to talk about it with anyone, ever. Which is exactly what I do. I am on disability for it, too. So people like to say it would be nice if they could get paid for doing nothing. I worked from 1986-2002 paying into the fund to be paid for 'doing nothing' if it ever came up... When people asky why I don't have a job, my husband says he doesn't think women should work, which is a lie, but people usually drop the subject after that... he takes the flak for me

You all seem to be nice, though. I thought I'd give sharing another shot.

I had the same procedure two years ago. Gallbladder pain can be excruciating. I put off the surgery for 9 months, because I was afraid. But you are right, it wasn't that bad!

pitcherday said…

I have bipolar disorder. It's pretty much impossible to control if I am under a lot of stress. I have generalized anxiety disorder, too, but again, the less stress I have, the less it bothers me. Usually, I don't like to talk about it, because many people i run into say insensitive things to me ("I wish I could have a couple of 'happy' days like that once in a while!"), which are mostly not their fault, because talking about mental illnesses can make people uncomfortable so they will just say anything. But when I get comments about how if I prayed, Satan would lose hold of me, or I am throwing myself a 'pity party,' or how everything today is called an "illness." It makes me not want to talk about it with anyone, ever. Which is exactly what I do. I am on disability for it, too. So people like to say it would be nice if they could get paid for doing nothing. I worked from 1986-2002 paying into the fund to be paid for 'doing nothing' if it ever came up... When people asky why I don't have a job, my husband says he doesn't think women should work, which is a lie, but people usually drop the subject after that... he takes the flak for me

You all seem to be nice, though. I thought I'd give sharing another shot.

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and thank you for sharing. We are nice. And many of us it seems have our stuff whether physical or mental. Me - I have both - an autoimmune disease (Sjogren's Syndrome) and panic disorder. Not on meds for the first but I am for the panic. Jo

I just love how it takes YEARS to determine what is wrong with someone. I often watch the show Mystery Diagnosis and am amazed at how long people have to suffer before someone either pays attention or actually is familiar with what it could possibly be!

I found out, after a traumatic health issue involving a kindey stone that nearly killed me, that I obtained type 2 diabetes. I must say, it's a royal pain. My feet and joints hurt me quite often and the smallest of scratches and wounds take forever to heal. I wish I could just wake up one day and be in perfect health.

I have heart disease,bone disease,lung disease, now breast cancer. I'm diffenently in bad heath at age 53.

It's nice to share stories. I understand what you are going through. My sister has the same thing. She has plenty of good days, and she tries to make light of it. Everyone has their own problems, just most do not talk about it. It's a hush, hush type of world. If people have understanding and compassison in there heart, they would know people don't ask to have certain problems. You know, no one is perfect, if we were life would be boring. Yes, I've heard the speech's, one lady was a born again, even gave me a CD and Bible.....And kept going on...and on....and on......I thought they are not suppose to be judgemental. Like I wrote before I haven't walked in your shoes, you haven't walked in mine. And that is nice your husband takes the flak, and he understands. That is what is important, he understands. It doesn't matter what other people perception is.

Thank you for sharing, and giving it another shot.

I had breast cancer, stage 2, in 2003; went through chemo and radiation. In April of 2007, I found out my cancer returned, in my bones. I am now stage 4. It's no longer curable, but it's manageable.

I am also dealing with nerve pain in my left hip; that is where most of the cancer was when it returned and I had radiation on that area. The pain specialist I have been seeing believes it's damage from the cancer and/or the radiation. He's tried different injections, and medications, but nothing is relieving the pain, so I am seeing an orthopedic surgeon he referred me to a week from Friday.

I was 39 when I was diagnosed the first time, and now I am 45.
I tried to keep working as long as I could, but it just got to be too much to handle, so in November I quit working and now I am on disability.

darlyn63 said…

It's nice to share stories. I understand what you are going through. My sister has the same thing. She has plenty of good days, and she tries to make light of it. Everyone has their own problems, just most do not talk about it. It's a hush, hush type of world. If people have understanding and compassison in there heart, they would know people don't ask to have certain problems. You know, no one is perfect, if we were life would be boring. Yes, I've heard the speech's, one lady was a born again, even gave me a CD and Bible.....And kept going on...and on....and on......I thought they are not suppose to be judgemental. Like I wrote before I haven't walked in your shoes, you haven't walked in mine. And that is nice your husband takes the flak, and he understands. That is what is important, he understands. It doesn't matter what other people perception is.

Thank you for sharing, and giving it another shot.

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Thanks, darlyn63. Yeah, other peoples' perceptions shouldn't matter, and usually they don't. It's just that i am a really accepting person so when people rely on information they got from TV drama shows and widespread myths to form an opinion on others, I find that to be confusing and off-putting (about any condition). Even if I can't walk in someone else's shoes, I'll at least go read a book to see what the fit would be like. I don't mind sharing and discussing, but I don't think i should have to defend myself, unless I have actually done something wrong.

You're welcome, maybe I will share more sometime... and maybe soemone else will feel ok about sharing too.

i have had a stoke , and find it very hard to learn i have limits,and to let others do for me.it has affected my right side both hand and foot. i dont get depressed but i get angry because i can not do for myself. i look at every day as a blessing as it could be worsre or i may not be here at all. i go to therpy every day  and see people worse off than i am , and i give mt thanks every day.

physical health: scoliosis

mental health: depression and anxiety

pitcherday, I'm like you I educate myself on alot of things. Family and friends think I know it all (which i don't). I love to learn, didn't like it in school. It's the important stuff I care about. I've asked my sister what it's like, read up on it. My son I came to find out has anxiety, and panic attacks. Not so much now, but they pop up when you feel under stress. I know very well, I get anxiety attacks also. Yoga has help, and so does Xanax, did I ever think I would take anything for it no! But like my doctor said "Honey you shouldn't have to suffer like that". At one time from stress I just about lost all my hair, my skin was cracking and bleeding-fingers and feet, plus I lost 35 lbs. All from stress. So many doctors told me I had Allipichia (?), I said "No I Don't" Finally I met a doctor who asked if anything traumtic happened in my life 4 months prior, as a matter of fact something did. Took 4 months for the experience to take it's toll on me. In the mean time I made myself bandana's, some with :) on the front, I had a Harley one...Everyone called me different names....hey there is Sunshine, Blueberry Muffin, B*ker B*tch, I had to try and have fun with it. Otherwise if I believed in some of the doctors I don't think it would of come back...The real kicker..my husband and I were playing pool one night..and a guy tried to pick me up...Now that made me feel good!Most certainly plenty have worse problems. Nobody should judge you, you know who you are! And you have a wonderful husband who understands. Mine doesn't, he doesn't get it. How it makes me feel at times. I guess maybe I experience it so I can understand what my son goes through when it happens to him. The people who watch the "Drama shows" and don't understand are just ignorant. If I believed what I heard about me at one of the stores I work at (I do audits in different stores) I am a Hooker! A customer asked a cashier that, first I was numb, then felt hurt, then I thought well how ignorant that women was to assume that. And was she checking me out, or was her husband? So when I go to the store, (a small family grocery store) they say "Hi Strapper" (Stripper & Hooker put together). Life is too short, all that really matters is You Know Who You Are, That Is What Is Important! You do not need to answer to anyone.

Sorry about rambling again. Hey if I get good enough reading what everyone is writing, maybe I could write my Life Story......YAWN!  zzzzzzzz

pitcherday said…

I am throwing myself a 'pity party,'

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I get that a lot too! I didn't realize discussing ones problems and looking for pity and attention were the same thing!

I'm also unemployed/receiving disability benefits. I've been aching to start working again, but I feel drained almost constantly and have been struggling to get my energy level up. I'm in school, so that at least gives me something to do to stay productive, not to mention increase my earning potential when I finally am able to go back to work.

I am amazed and grateful that people are so open about sharing their physical and mental issues. You now, I learned a while ago that not hiding things is so liberating.

So for me.... I'm going deaf. My father went deaf at age 23 and I inherited whatever caused his deafness. I have hearing aids. I still can hear without them but it's pretty darn noticeable that I miss a lot now. I hear things but understanding speech well without aids is getting tougher. I'm scared but trying to prepare myself for "the day". I guess this is not an illness. It's the way it is for me. I will go on and live my life just in silence and man, that's a scary thought!

I have an underactive thyroid - controlled with thyroid hormone.

I have a Vitamin D deficiency and a Potassium deficiency  - controlled with supplements.

I have Chronic Fatigue Syndrome or Epstein Barr Syndrome. The doctors are still fighting over which. Doesn't matter to me what the name is. I'm tired a lot. I also have SAD (Seasonal Affective Disorder) which only hits in the winter. I just wrote a long essay about it and a blog. I am managing it without medication. But the two together make the word nap wayyyy better than the words money, chocolate, or even sex. Money perks me up though. Heh.

I have some neck issues - bulging discs and such but I'm dealing with that without treatment. I don't want surgery.

I was agoraphobic many years ago and have suffered from panic attacks all my life. Literally, I think I was born panicking over what was to come. I take Xanax for that and I'm doing well. There are still places that I say "OH HAIL NO, I am not going there" if they are huge or really packed with people. I generally DO go into scary situations but not without my share of heart pounding and shakiness.

And lastly, I am ADD. Well...my doctor and I have determined after tons of talks and tests that I PROBABLY am. I refused medication for that. My ADD fuels me to be creative and to multitask. I literally do 10 things at once and, while concentration would rule, I don't want any medication that I can live without. I manage but in a cluttered, tiny attention span sort of way.

The list looks long but really, I am very blessed. I know people my age (45) who have a load of serious illnesses and I am grateful everyday that what I do have isn't life threatening. Naturally at any time things could change but for now, I'm doing the best I can like everyone else!

Thanks for sharing PattyTherre! I have been looking for a way to fill some of the time that I get paid for doing nothing... I have always wanted to help out people, but I get bored easily. I signed up yesterday to take classes in ASL (American Sign Language). I have a perfectionist streak, so the challenge of learning a new way of expression coupled with helping someone out will be a pretty good fit, I think. Since I am already "getting paid" I plan to do it for free. I'd like to make life a little easier for people who have lost something important like a sense, so i will think of you. Consider me inspired.

I too, have ADD. I can't go on anything for it, because stimulant medications cause mania. Stress and insomnia are usually precursors to mania. During my last three years in Texas, I was awake for five days straight, slept a day, and awake for another five, along with the debilitating symptoms of mania, I was barely coherent because your mind is going anyway since it was not made to be awake for so long. My body finally gave out and I slept for almost a week, only to come back to the same sleep/wake cycle. When I get stressed, sleep is the first to go, followed closely by uncontrollable mania.

I too take Xanax for anxiety. I don't know if anyone here has ever had a panic attack while you are asleep. I get those and they are absolutely terrifying. When I am awake I know it's a panic attack, but if one wakes me up I think I am dying. Since I can't breathe and my heart is pounding so hard, i can't even move to wake up my husband so I just lay there scared. I can't even reach the Xanax.

I am on Seroquel for bipolar, and it works, but it has raised my triglycerides. I am trying fish oil and other dietary things. I do not want to be on a medication for that too! The Lamictal I am on also has thinned the enamel on my teeth so much that I have (conservatively) spent in the area of $3000 - $4000 out of pocket on my teeth. They are really painful to brush and if I need to have work done, I need to go under sedation because Novocain doesn't dull the pain. My dentist in Texas was such a cutie and so nice, and I vomited on him from the sedative. Talk about insult to injury!

I'm 36. Some days I feel more blessed than others, but I am hopeful for the future. Sometimes I feel like Laura from "The Glass Menagerie," because my husband has taken it on as his main purpose in life to shield me from stress. I appreciate it, but I am not that fragile, and I do have a very good sense of humor about it if people aren't overly ignorant. Like dlynell said, discussing symptoms is not asking for pity or attention.

Would you like to know what the number one thing is that perplexes me about all this? When people mistake my actual personality for mental illness! Uh, no... that's just Dayna.  :)

I have a question....how do you know when it is the gallbladder? And what area in the body...Is it a constant dull pain? Sharp? I've learned alot about other parts but that one I do not. Just curious. Thanks for letting me know. And for everyone's sharing.

My thought's and prayer's are with you.