I'm Crying Like A Baby
Posted 11 November 2004 - 01:07 PM
You would think I have lost a loved one or something. I feel so ridiculous (b/c I'm normally an upbeat person)....but I'VE HAD IT!
I'm in my late 20's and feel like I'm in my late 80's!
I rarely complain, but I'm tired of having epilepsy, lupus, fibromyalgia, and celiac disease. It seems like my whole life I've been a test subject (possible cancer, possible multiple sclerosis, definitely this or that...).
I just need to vent! I can't handle all of the joint pain, mouth ulcers, migraine headaches, seizures, muscle cramps, restricted eating, fatigue, constipation, hair loss, tremors, acne, dermatitis, drug induced anorexia, loss of vision, esophageal ulcers, esophageal narrowing, and infections!
...But I'll survive. Everytime I end up in the hospital, I tell myself this. I know it's true.
I know others are worse off than me. This isn't a competition though...it's my life. They are entitled to their bad days, and I am entitled to mine.
This is one of them. Thanks for letting me rant for a moment. I've stopped crying. Typing this took my mind off of crying. So without even knowing it, you helped me just by taking the time to read this!
I would love to have some supporting words and input on how you guys "handle it all" (I'm always open for suggestions)! All I ask is that you don't critisize me for needing to vent.
Blessings and many hugs.
-Julie (not usually this down...just having a rough day)
Posted 11 November 2004 - 01:33 PM
Vent. Vemt. Vent all you need! These forums are a great place and I am sure you will receive many positive upbeat commentaries. Personally, I have not had health issues to your extent. Although until moving from Michigan to VA I was very healthy, never been hospitalized. Now that I've moved here, I've been through many ordeals, from viral bugs, facial paralysis, a tumor, and a newly found brain abnormality. So I can relate to the test subjet and exhaustive doctor visits.
It does get frustrating and I can tell you I broke down many days just in tears, wanting to know what the heck was wrong with me! Adn even with the explainations, I feel like my life will never resume its normal ways.
However, you will survive! You'll vent, and get through the bad days like today! That's what it's all about.
My personal way of coping is through my family and significant other and all of their support. Celiac disease may just be one more thing I add to my list. And they have yet to think I'm crazy. So if you don't have someone in your life that gives that immediate support, I certainly hope this board offers you somewhat of a shoulder to cry on. Just remember you're only human and you have every right to break down! Nobody expects us to grin and bear it all the time 24/7. Its insane!
Best Wishes to you and I hope your day has improved or that tomorrow will be 100% better for you!
gluten-free since Nov. 18, 2004.
Always learning along with the rest of everyone else... a never ending process.
Posted 11 November 2004 - 01:59 PM
Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
Posted 11 November 2004 - 02:28 PM
Oh, by the way, celiac and my symptoms get me REALLY emotional, as well. By all means, let it out.
I know that there are MANY with far worse than I have. I'm not going to die of celiac. I'm not going to have abdominal pains, vomiting, low weight, nausea, gas, bloating, diarrhea, and the emotions of these symptoms forever. I agree with you on the point that although there are many with worse, it isn't a competition. After all, I look at it as: there are many who have it worse than me, but there are also many who have never faced any problems at all!
Posted 11 November 2004 - 02:53 PM
I don't think everything revolves around celiac disease but so many people don't know what it is or how it effects us.
Just know in your heart that you will feel better and your usual outlook on life will return. And always know there are people out here that know what you are talking about, understand and will be there for you!
" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003
Not a medical professional just a silly celiac
offering support, my
experience and advice
Posted 11 November 2004 - 04:15 PM
Positive DH biopsy 4/19/04
Posted 11 November 2004 - 04:34 PM
I'm so happy that I've found this forum. Everyone has been so warm and welcoming. I hope I contribute to people here as much as you all have already done for me.
I had a small seizure earlier tonight (not surprising considering how emotional I've been all day).
But I'm excited because I got to go grocery shopping and buy some more gluten-free brownie mix! (sometimes the small stuff brightens one's day the most).
You guys are the best! Much hugs and blessings to you all! -Jules
Posted 11 November 2004 - 06:11 PM
My wife is a great support during this time. Of course, I know that Celiac is a life sentence so to speak. She helps me remain gluten-free, but, at times, messes up. She reads all the labels now, as do I. She misses things sometimes, and any time she tells me I can have something, I always double check! There has been a few times that I notice a label says "contains wheat" when she missed it, so, I never trust her, but, she most often does really well.
Yesterday, she made a mexican dish, minus all sources of gluten until she dumped some taco seasoning into it. My son said "Can Dad have that?" "Oh NO!" she says!
Anyway, my primary coping source is my wife, and this board too.
Posted 11 November 2004 - 07:57 PM
I think no matter what our lot in life, there are times when it is all just too much. Venting and crying are good for you, just like being thankful and all that. (But sometimes you just need to have a pity-party without any of the "but other people have it worse" additions, huh?!) One thing I have been working on is learning to reward/treat myself/celebrate without food! Man is that hard! We're so conditioned that it isn't a birthday without the cake, it isn't dinner out if you don't have a whole meal.... and after we were all tested, it turned up all sorts of weird minor ailments we have to navigate around. I don't have the stamina for re-creating bread, so we just (for the most part) gave it up! And that was such a relief!
Have you ever taken a foreign language? And you know the moment you've really learned it is when you stop translating it back into your first language? Celiac is like that. When you stop comparing every cookie, every bread, every dish and just eat what makes you healthy, it's soooo much easier.
Anyhow --- buy yourself a coveted magazine. New nailpolish. Give yourself 15 minutes of calm on a walk in the middle of lunchhour. Surf the web. Count your blessings with sincerity. Read a stupid bodice-ripper book! Find your best self and be glad to do so. We'll be right here when you need to vent on the bad days, and hope for good ones.....
mom and wife to celiacs, myself with Hashimoto's and hypoglycemia
Success is never final and failure never fatal. It's courage that counts -George Tilton
Posted 12 November 2004 - 08:32 AM
Posted 12 November 2004 - 09:38 AM
Where in GA are you? I'm in Lilburn - my doc handed me some info on a support group yesterday....if you're close enough, that might help!
At least you were only crying: I simply lost my mind on the soccer field when an opposing player kept on banging (has a bit of impact on my arthritis) into me on purpose when there was no ball play near us. With all the preparation, effort and care I put into my game - she really p'd me off.
So when there was a ball played near us I unleashed - not a very flattering thing to do. So hang in there! We all do "stuff"
been gluten-free 4 yrs.
too many food allergies to list!
Posted 12 November 2004 - 10:50 AM
Take it minute by minute if you. Breathe in, breathe out. (Can you tell I've been through some hard times too?)
Over 15 years ago, someone said to me, (in a not so nice way), you go to sleep, you wake up, and you got over it didn't you? Well it was true, to some degree. I friend of mine who has Lupus with at least 7 uncurable auto-immune diseases told me she deals with some of the pain by imagining what it felt like not to hurt. Sounds confusing but say your hand hurts and you remember what it felt like not to hurt and poof the pain is gone for a little while. If you get good at this and the pain doesn't go away get to the hospital. ( I used it to relieve headache pain for hours when I had meningitis, when I realized the pain was getting that much worse, I needed to be hospitalized.)
By the way search for checker beads. Look at the amazing talent my friends illness brought forth.
Posted 12 November 2004 - 12:08 PM
I took today off of work! I needed to do it for myself...and I'm glad that I did! I have started my antibiotics for this most recent infection that my body is fighting, and I took the day off to "play"...my house is a wreck and I don't even care Well, I do care, but today is about taking care of myself physically and emotionally (My house will still be here tomorrow...the dirt isn't going anywhere until I clean it...so I'm in no rush)...hee hee.
I'm looking forward to that "Lord's supper" too. I'll be the first to eat a yeast roll and toll-house cookie! See ya there one day!
I live out near Conyers and Rockdale County. Kind of in the boonies!
Joanna, Laura, and Glen ((((HUGS))) to you for the encouragement and words written from experience. Those of us that have "been there" often offer more hope and knowledge than any doctor ever could.
Much hugs and blessings to all.
Posted 13 November 2004 - 12:15 PM
I am so impressed by your positive attitude! I felt better just reading your posts, and knowing that with all the illnesses you have going on, you just keeping getting up and putting one foot in front of the other, following your dreams, even if you have to switch paths to do it. I imagine we have all had some pretty good crying fests, I know I have. I'm going to remember what you said about taking time for yourself, and follow your lead by doing something good for myself today. I'm glad I'm not the only one who let their house go today in order to do something more fulfilling, rewarding, or creative. Yes, it will still be here tomorrow, and I think I'll just wait until then to clean it up. Best wishes and good cheer! Welda
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