A VENTING thread! Just to get it all out...

This morning I woke up and got super sad....
I miss the days where I didn't have to worry about what I ate, could have a beer with my friends, could enjoy life without worrying where the nearest bathroom is. I could go places without anxiety and feel normal.
Why on earth have we been cursed with this disease?
I'm tired of being sad about this. I've gotten pretty depressed and feel almost worthless. I can't work, I can't be a good mommy, I can't be a good wife with this stupid disease! More than anything I can't ride horses which I love to do...my greatest love.
I believe I am most angry that they have not found a cure for this. I just want it to go away....
So maybe instead of being sad, angry and depressed I will try and focus on the fact that this happened to me for a reason. I have never been a healthy eater, so maybe this happened to me to force me into eating healthy food. I'm not sure but I know God has a plan for everyone and this was his for me...
Sorry, I just had to vent to those who know where I'm coming from. No one else close to me understands...

Hi JSE.

I am sorry you are not feeling well. This is a very tought disease (I am on my 10th year, with a 4 year remission between 05-09).

If you are feeling that sad you may want to consider seeing a therapist who specilizes in disease management. They are out there and can be very helpful.

You may also want to consider alternate medical approaches (like Pred) if needed to get out of your flare. Perhaps you need a follow-up with your doctor and letting them know how you are feeling?

Best,

ML

mysticlaker said...
Hi JSE.

I am sorry you are not feeling well. This is a very tought disease (I am on my 10th year, with a 4 year remission between 05-09).

If you are feeling that sad you may want to consider seeing a therapist who specilizes in disease management. They are out there and can be very helpful.

You may also want to consider alternate medical approaches (like Pred) if needed to get out of your flare. Perhaps you need a follow-up with your doctor and letting them know how you are feeling?

Best,

ML

Thank you. I would see a therapist but I have no insurance. I am currently applying for Medicaid in my state. Hopefully they give it to me. If they do, I will be going to see a Dr. at John Hopkin's. I've been told from a few people that they are the best bet when it comes to gastro issues. I also can't take Prednisone because I have a rapid heartbeat and it makes it worse for me.

I have had this for 18 years and I was in your same shoes when I was first diagnosed. I did the oh why me and the what ifs for a very long time. When anyone is diagnosed with a chronic illnes they go thru a grieving stage just as you would if you lost someone you love. In the end of this process comes acceptance. Sometimes it's a rough road to get there but in the end you will come to terms with your Uc and begin to tell yourself at least it isn't something worse such as cancer. You then start to realize and focus on the things that you DO have and CAN do.

Please do not think that judgement is being placed on you. Uc is what it is and nothing you did or didn't do put you were you are.

So try to take a step back, make a list of the GOOD things in your life and realize that your life is not over and you can still make the best of it.

But know that in the meantime until you can get your head in the right place that we are here for you and and we can help you get where you need to be - mentally and emotionally. (hugs)

My suggestion would be to have your vitamin D level checked and then take an appropriate dosage of Vitamin D3. I don't believe that taking Vitamin D3 helped in suppressing my UC but it did wonders for my attitude which allowed me to research other options for dealing with this disease. I took 5000 IU of Vitamin D3 daily for half a year before my level was to an appropriate range and I continue to take that much to maintain my level. Struggling with this disease has been far easier with a positive and content attitude where I have been using the opportunity to try to successfully manage the disease. Previously I was merely trying to survive its vicious onslaught over and over again.

I can completely relate to how you are feeling. I have gone through many ups and downs through this past year. SOme weeks are good, some are bad both physically and emotionally. I always seem to feel so guilty about not being the best wife and mother. I wish too that we did not have to suffer through this. Try to stay positive, when you can, and continue to hope for that remission. I was in one for 6-7 years and I soooo want to get there again.

quincy said...
We're human....crap happens, and we're made with defective genes...passed on from our parents, their parents, you to your children and changed from influence of the environment in which we live. God has nothing to do with the process of free will....Try not to remove yourself from control in which you do have.


There's no cure for UC, as there's no cure for many diseases. We're just one disease in many others. Not that it's a consolation, just a fact. Be angry for a while and learn to move forward. Have bad days, but plan for better ones.

Pining for the good old days should be a way for you to figure out how to make the soon to be days work better. It's your responsibility to be a good parent...seek the help you need and involve others who can help with the process.Therapy is a good thing...when you can afford it.Change your rectal meds from Canasa to retention enemas (Rowasa), and I agree to have your Vitamin D checked.I'm amazed that those who hate suffering so much want to have kids....q

Having kids is in no way, shape or form suffering. I love being a mom, I just wish I could enjoy it more. And even more than that, who loves to suffer? I don't know many people that do. I have a wonderful family and a great husband who, while he doesn't always understand, he supports me and that in itself is more than anyone could ask for. I was merely just venting to people who know how I feel.
Canasa is my only option right now because they are giving it to me for free for a year. I can't afford Rowasa, and even if I could get them to give it to me for free I would need to see a Dr. for a prescription and I don't have the money to do so.

Jse,
I appreciated your vent. Today has been a difficult day. My vent: Sometimes there are just days when I am so sick of not being strong, reliable and healthy that I just want to scream. I have gotten fairly used to all of my food restrictions: no wheat, red meat, milk, fried foods etc. but today I had to add yogurt! Every time I have it I start to bleed. Boo, hiss! I am also tired of having to keep a whole change of clothes at work because of "accidents." I would love to be able to go grocery shopping or to the hardware store without having to use the bathroom at every stop.
On the other hand, I do have a lot to be grateful about. My husband was laid off so we get to spend a lot more time together growing vegies and fruit in the garden. My kids are happy and healthy and are actually enjoying not having camps or classes this summer (we can't afford it right now). They are both volunteering on a political campaign and earning spending money grading papers for lazy summer school teachers. I still have a job even though I am still not strong enough to work full-time.
UC is a roller coaster of ups and downs. I hope the future will bring us a lot more ups than downs. Thank you for venting and giving me an opportunty to vent too.
Cynthia

bosnianboy12 said...
You know, it's normal to get depressed about it sometimes. We all do I'm sure of it. But, I always look at the bright side of things, there's people who can't even walk, see, or can't feed themselves. Yeah it's an annoying disease, but we should still be happy that there's many worse things out there! Just stay positive, who knows what the future will bring! :)

It's funny you say this because once I come to grips on a hard day, I look at myself and say "You can see, you can walk and at least you can RUN to the bathroom if need be!" :o)

Hey, this UC can be depressing as other diseases.  AND - I get sad for my husband who has lung cancer.  He has been in remission for 3 years and refuses to let it get him down.  He would have wasted 3 years if he did.

My Mom was blind the last 3 or 4 years of her life.  She told me she would give ANYTHING to be able to see again - she did not mind being in a wheelchair or not being able to hear but not seeing is so much worse.

Anyway, I am sorry you can't afford to see a doctor and get medications that would probably help more.  What about a free clinic - we have lots of those in this area. 

At 70 I not only have UC, IBS but also can't walk without a cane or walker due to arthritis.  Hoping to have a knee replacement in the Fall.

Best advice I have is - deal with it HEAD ON!!  You will be fine.

Hugs, ElaineNY

jse said...

bosnianboy12 said...
You know, it's normal to get depressed about it sometimes. We all do I'm sure of it. But, I always look at the bright side of things, there's people who can't even walk, see, or can't feed themselves. Yeah it's an annoying disease, but we should still be happy that there's many worse things out there! Just stay positive, who knows what the future will bring! :)

It's funny you say this because once I come to grips on a hard day, I look at myself and say "You can see, you can walk and at least you can RUN to the bathroom if need be!" :o)

HAHA yeah! Imagine you couldn't even run to the bathroom! It's annoying, but it could always be worse. Just stay positive!!