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Just Venting Again :P

jasonD2

By jasonD2
in Coping with Celiac Disease

Recommended Posts

jasonD2 Experienced
jasonD2
Posted

I am completely consumed with my health..to the point where I have no life and nothing else matters. I spend hrs on the web every day looking up stuff and just cant back to my old self. I am spending a fortune on supplements, IV nutrients and tests. Ive had every test known to man these past few months...endoscopy w/ biopsy, colonoscopy, ultrasound, organic acids, nutrient deficiency, Lyme, HIV, Hep A-C, etc. So far nothing bad found, yet I just cant get better. The main focus now is parasites..I have 5 of them and one in particular might be causing a lot of my problems (Blastocystis). I feel like this is self inflicted...back over the summer I was trying extremely hard to eradicate some yeast & c.diff overgrowth so i went on a no sugar/low carb diet and took a bunch of supplements..well, in trying to solve one problem I created 3 new ones...parasites and gastritis and more food sensitivities. I now cant eat fruits or avocados or corn. My gastritis has been so bad that ive been eating baby portions of food- thankfully with the help of a product called Mediclear Plus ive been able to tolerate larger meals. Now I am about to start a regimen of antibiotics/antiparasitic drugs and god knows what they will do to my body..again i may treat one thing, but creat 10 new problems.

I have no balance, I feel off center and every aspect of my life is suffering..job, family, friends, social life...my parents are sick of hearing about my health but they are supportive at the same time. I constantly go over things in my head...if i do this can i do that, if i eat this will this happen, if i dont eat this will it help that, etc. Am I just wasting my time? should i just throw in the towel and say the hell with it and accept that im always gonna feel like crap? I dont know what im doing anymore...I'm so far from the person I used to be.

thanks for listening as always

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jackay Enthusiast
jackay
Posted

Jason,

I'll be praying for you. I can relate to what you are saying because I felt like I had no life for four years. I spent hours online trying to find help. I don't have all your health problems but I thinnk I understand your pain.

I wish I was good with words and I'm not. I do want you to know I care and do hope you can find relief soon. Hang in there.

Jackay

butterfl8 Rookie
butterfl8
Posted

Hugs. And vent away. I hope this next round of meds does the trick for you, with little harm and much help.

-Daisy

Wolicki Enthusiast
Wolicki
Posted

Jason,

I am so sorry that you continue to struggle. I can tell you from experience, I've been there and done that. Just a little about my journey, for some perspective:

I am 43, and a single Mom, raising 2 boys 100% alone. Their father is not involved, both my parents died in the last 5 years, and my siblings are far away.

10 years ago, I got sick. And I stayed sick for 10 years. I went from doctor to doctor and no one could fix me.

8 months ago, I weighed 97 pounds. I am 6 ft tall. Docs finally figured out it is Celiac. I started to get better, but all hell broke loose once I started to recover. Every hormone went bad, kidneys went bad, I was a wreck. Then I woke up 35 pounds heavier one day. A week later, I gained 18 pounds in one day. Today, I have at least 60 pounds of extra fluid in my body. And it sucks. And it hurts.

For months, I just cried a lot. Feeling out of control and hopeless. Docs couldn't figure it out, I spent hours on the internet every night,and nothing.

Then, I realized that I need to "stop the stinkin thinkin," as Zig Zigler would say. And it worked. Most days, I feel pretty good, even though I am still struggling with recovery from malnutrition and leaky gut.

Why did I share all of this? I know that you have had a very tough road, and it might not be over yet. With luck, the treatment for the parasites will work, and you'll be on your way to health. But, in the meantime, you really do need to try to focus on the positive. I know you might not see a lot of positive right now, but it's there.

My suggestion is to seek a qualified counselor or therapist. I think you could probably gain some really good coping skills, and how to maintain a positive attitude. If you're one of those who "poo poo" therapists, please reconsider.

My first experience with a therapist was a few weeks after the Northridge Earthquake. I lived 3 miles from the epicenter, house destroyed, and the aftershocks were just killing me- I couldn't cope. I tell you truly- one visit with a Red Cross Counselor and I was 99% better. She asssured me that my fears were normal, gave me a few ways to cope and, in short, helped me to get my life back.

Please think about it. I think it could do you a world of good.

Janie

jasonD2 Experienced
jasonD2
Posted
  • Author

Thank you Janie- very admirable that you raised 2 children and battled your health problems at the same time. I am an only child and was raised by my mother (dad died when i was 9) so I can relate even more so to where you are coming from.

Therapy is definitely on my list, just gotta find someone Im comfortable with. Also all my nutrient deficiencies are contributing to my depression, so hopefully once those balance out I will start to feel better.

When I was getting my IV therapy today I shared a room with an older woman who was seriously ill...im thinking cancer. she was there with her son and had a very healthy attitude despite her condition. this put things into perspective and made me realize that things arent so bad, but sometimes i just get trapped in the zone and it takes a while to pull myself out..im hoping therapy will help me pull myself out quicker or better yet prevent me from going into that dark hole.

Thanks for sharing your story and good luck :)

Wolicki Enthusiast
Wolicki
Posted

Thank you Janie- very admirable that you raised 2 children and battled your health problems at the same time. I am an only child and was raised by my mother (dad died when i was 9) so I can relate even more so to where you are coming from.

Therapy is definitely on my list, just gotta find someone Im comfortable with. Also all my nutrient deficiencies are contributing to my depression, so hopefully once those balance out I will start to feel better.

When I was getting my IV therapy today I shared a room with an older woman who was seriously ill...im thinking cancer. she was there with her son and had a very healthy attitude despite her condition. this put things into perspective and made me realize that things arent so bad, but sometimes i just get trapped in the zone and it takes a while to pull myself out..im hoping therapy will help me pull myself out quicker or better yet prevent me from going into that dark hole.

Thanks for sharing your story and good luck :)

That's why we're here to razz you and remind you :P Makes me think of Cher in Moonstruck: "Snap out of it." (meant with care and concern). Have you asked friends/family for a referral to a trusted therapist? That's sometimes a good route.

I am feeling positive for you! Try to walk on the sunny side, as I am sure you will be feeling better very soon.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Keep on venting. You will find the answer! Maybe the antiparasite meds are the answer. I have been praying for you and will continue to pray that you get healing and get back to your former healthy self.

I agree about the therapy. It can really help to have someone to talk to and help you put things in perspective.

It's hard to stay positive sometimes when you feel awful. It's hard to know when to keep reading and looking for answers and when to walk away from the computer and just live life. It's important to find joy in small things. Like today I went outside with my kids and played croquet. We sat around and enjoyed the sun and the quiet and it was great. It got me out of my head and my own confusion and worry about feeling sick.

Find some things that give you peace. I also have been reading some great novels lately that have taken me out of my head too.

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Mskedi Newbie
Mskedi
Posted

First off, feel free to vent here as much as you want so you can ease off venting to people you see daily. Sometimes people hear complaints from one person so much they start getting annoyed, but on a message board, if you get to that point, people can just skim. :) Also, most of us empathize to at least some degree since we've all suffered mysterious symptoms pre-diagnosis, so you're in good company here.

Second, I think the idea of finding a good counselor or therapist is a good one. You've got real health problems going on, and your concerns are valid, but I worry about how unhappy you sound in your posts. I'm not saying you have no right or reason to be stressed and discouraged -- based on what you write, I understand -- but maybe someone can help you bring some balance back in your life and help you see things from a more positive viewpoint.

I wish you well.

kareng Grand Master
kareng
Posted

Hey Jason. I agree with the person who said to find small joys. When I'm depressed with this, I try to just go outside & watch the birds & my dog (not as sick as that sounds - he ignores the birds). Accomplish something little - clean & wipe out 1 shelf in the fridge, 1 load of laundry, etc. Also, you might check some of the churches in your area for counseling help. We have a large church here & you don't have to be a member to go to the support groups for illness. Some hospitals have groups like that too. Good luck!

ciavyn Contributor
ciavyn
Posted

Oh what the heck, I'll add in my $0.02. You are going through a traumatic experience, and it's normal to feel frustrated and overwhelmed. And with all the work and research you are doing, you will eventually find the answer...and seeing a therapist would be a great move. Not just because it may help you get better perspective and learn coping skills (thank God for mine -- she's why I'm still here today!) but also because that clear mind and fresh perspective may help you on this journey to see something you or your doctor missed, or just didn't see yet.

Good luck, and I don't blame you one bit for venting. I'm the same way when I'm frustrated and feel like crap.

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