Why me? Why not me?

don't feel guilty for complaining. yes, there is always someone worse off than ourselves, but that does not diminish our own anguish and situation! hate crohn's, colitis, cancer!!! hate those damn things, and try to kick their ass. there are so many ups and downs in our disease. try to introduce a few "ups" in your day. small things. music, reading, a nice conversation over tea, facial/massage, enjoying nature....getting your mind off something that has already consumed so much of us! crohn's and colitis have invaded our bodies, but we will not let them rot in our minds! it's very hard, but best we can do is keep on keeping on, and surround ourselves with positive, healing energy, and a means to make this life we have as enjoyable as possible.

FQ,
Couldn't say it better myself!
Sharon

I agree with your advice of finding positives and I am normally a very positive person. However, when I am in a flare like now, it's not easy to maintain a positive attitude. This flare has been rough. Thanks for the encouragement.

This is the place to come to complain, honey. We certainly 'get it'. Pity parties are healthy -- and well deserved. Go for it!

Hang in there, Tina,

We've all been there....sometimes it feels like you're a goldfish in a small fishbowl, looking out and seeing the rest of the world go on without you.

But then you feel a little better one day, you see the sun shining, and you watch a baby smile. You'll be ok....we're fighting right there with you!

I'm not saying this to be mean or to try minimize your situation because I'm sure you are struggling but spend an hour in a cancer center and look around. I have been going for iron infusions and I have to get them done in my hospitals cancer center and sit there with the folks getting their chemo. It really puts things in perspective. I was almost in tears today talking to the poor woman next to me.

Hang in there!

This is how I do it! I now live by what fq said earlier on! I was always consumed with GO, GO, GO! Onto the next project. Not anymore! My body can't do it and my mind has changed!
Also, I have two children boy and girl 23 and 20. My son when he was 6 weeks old diagnosed w/Neuroblastoma (Cancer). He did chemo and several operations throughout is life! He is a miracle to be here! I saw a lot of children w/cancer (all kinds) and that stayed w/me. If they can do it so can I (WE)! They always took their treatments w/smiles.
So...at 49 and faced with this disaster is tough and does Su_k! Allow yourself to mourn and feel sorry for yourself at least once a month maybe more (if u need it) but remember someone has it worse than us!

Roberta

quote:

There are times, like right now, when I feel helpless and hopeless. I feel guilty for complaining. I know it could be worse. Crohn's is not a death sentence. But there's the other part of me that says, "Why me?" I hate feeling sick all of the time. I hate missing out of family events. I hate Crohn's disease.

I hate my J Pouch too. And there's no need to feel guilty about complaining about the miserable life you're experiencing now. Be honest and don't lie or cheat yourself. Covering up the truth will do nothing for you but extend your misery and imprison you in your own lies

I don't hate my pouch but am pissed off that I have been in one gigantic Fibromyalgia flare for 2 1/2 years. It's just too much for my body to deal with. Plus I have IPS and didn't even know we could get that - I was supposed to be cured. I had IBS so it's not surprising I now have IPS. Plus I have chronic cuffitis - which is UC. Why don't they call it what it is? The Pathology reports come back calling it UC.

I still would have the surgery all over again.

There are days I barely make it out of bed. On top of all the fibro and abdominal pain I'm depressed plus have anxiety problems as well. I'm one big mess. I'm going to one more specialist, neurologist, this week and hope he can do something to get a few things working close to normal again. Both of my feet are constantly in pain, cold and numb. The podiatrist and rheumy did nothing to help them. This has been going on for years but got worse with the surgeries. It's difficult going up and down stairs. I'm pretty pessimistic now.

I know there are many people that are worse off than I am. I feel for them too.

If one more person tells me that God doesn't give us more than we can handle I might just go all PTSD on them. I'm not able "suck it up" anymore either.

End Rant....

I adore you Tough!
Sharon
ps...warn us before you blow!

Thanks my friend, Sharon. Like wise, you have been so great in helping me these past 18 months or so. This site and awesome people, like you, have been the best thing that's helped me since the surgeries.

Oops, don't know what I did but had a funky end to the post that I just deleted. I've never seen a post on here go that far to the right.

toughenough I, too, hated that same statement "GOD doesn't give us more than we can handle"! I use to hear it when my son when was sick.
It is okay to not "suck it up" anymore! This is a very TOUGH battle for all!
Have you thought about acupuncture or other methods in that family? That is my next step after this next procedure tomorrow. I did yoga when I had UC and it did help me a tremendous amount with all the pain. I need to get back to it but with all the surgeries I have been afraid. Don't want a hernia to form. I know I need it!
Roberta

hey roberta... go for the yoga. Just start with a restorative class and make sure you have a very experienced teacher that understands you may have some limitations. I surely wouldn't be afraid of a hernia. In fact, I believe if you start slowly and gently build your core strength that you will be preventing hernias. Just listen to your body.

I was doing yoga and pilates for a few months this summer and I felt so much better mentally. And now with a tube stuck out my butt... I can't seem to do anything.

RLC and all, I've had months of acupuncture and the slight relief was not worth the cost. I go every now and then now. I get a massage every other week. You have to find the right LMT that knows how to work on fibro patients. My husband bought me a hot tub. I've been on diets, cleanses, voodoo supplements and other such stuff. I did yoga daily for several years and went to yoga classes. I've had peroxide infusions and did the foot baths where it is supposed to be sucking toxins out of my body. I've read books, changed my diet, including excluding beef and have gone down every alley I could find.

Some of these alternative treatments help other people but the only ones I've found relief from is massages and time spent in the hot tub, not saunas. It's like soaking in a hot bath on steroids and helps the fibro, foot, backside and abdominal pain. Yoga is good too but it hurts to do it now, mainly due to my feet.

I have an awesome Internist that gets it and has been working with me for years. She's the one that told me to get a colonoscopy sooner than later 2 years ago. She is the one that brought up the surgeries, which my GI was grateful for. I was braced and had researched for the discussion and he was relieved. He said those discussions are difficult for him.

I tell everyone to try whatever they can, as long as it won't do any harm. My doctors, at the time, told me the peroxide didn't hurt me. The peroxide was a small percentage of the solution's content and the alternative doctor is an MD. It also went on her prescribed cleanse, diet, supplement program. They didn't help.

My son was born with a heart rhythm problem and had to be converted (shocked) the first time when he was 2 days old. He was a 10 lb baby in a NICU where 5 lbs was about as big as they were. It was 15 years of eggshell walking until he had the procedure that "fixed" his electrical heart problem. He's 6'4", has under grad and a Masters in Electrical Engineering. He works for a company that makes pacemakers and such. (I think that is cool.)

I'm grateful I didn't have to deal with UC when our kids were young. I admire parents that have to struggle with their children's health and their's at the same time. It is "tough" for me to take care of my grandsons alone and they are angels (don't all grandparents think that way?).

A great lady told me, when I was 13 years old and going through a traumatic life experience, "Go to sleep and things will be better in the morning." She was right. I keep telling myself that.

I am fortunate that I had UC for so long that time allowed me to try all of these alternatives. Maybe some of them helped. My heart goes out to everybody that has FAP, cancer or a short time with UC. Many times they are thrown into the surgeries without time to consider and/or try the alternatives.

Rainbow Pooper, I love your screen name and it is so true - especially after blueberries or gatoraide. Please hang in here and do what you can and try not to beat yourself up for what you can't do.

Thanks for starting this rant, I needed to get that out. I'm praying for more rainbows and sunshine in your life.

mgmt10
I have been to infusion centers many times and yes I know things could be worse. I am not taking anything away from them, but I still feel I have the right to complain about my situation. Crohn's is not a death sentence, but having Crohn's can make life a living Hell. I am in the minority in the fact that I never have remission. Crohn's disease is a constant daily battle.

Tough enough,
Thanks for your encouraging words and for understanding where I'm coming from. I've been battling this disease for 31 years. And that's a heck of a long time. As I said in my original post, I normally don't let it get me down. But then there are times, when I have a severe flare that it gets me down physically and emotionally.

liz thank you for the words of encouragement! I just had the barium enema w/tube hanging out and can feel for you (a little). I am not sure what is in store for me next. UC was found on sigmoidoscopy, had genetic blood work (sent to CA) for exact dx UC or Crohn's now w/jpouch. I meet w/GI doctor soon for follow up to all the tests. Stay tune....!
toughenough I too did all the stuff you said (holistic) along w/the feet, too. I enjoyed it a a lot! Yoga, massages and like you said hot tub soaking was the most relief for me, too! We must share the same pain!
I, too, say every day I am lucky that I did not have this disease when the kids were little. I would not have been the energizer bunny that I once was!

Roberta

I forgot my Chiropractor who is also an Nutritionist. She is an Atlas Chiro., means she's been through advanced training after becoming a Chiro. I had bad headaches, sinus surgery did not fix. 7 years ago I started going to her and she got rid of my headaches and with them gone I got to drop my high blood pressure medications.

She majored in Nutrition for her under grad degree. She has helped me with my supplements and my Internist is fine with everything I take.

Sorry I missed her in the last book I wrote for my last post.

Roberta
Do you have fibromalgia too? It's hard to tell what is causing what when you have multiple autoimmune diseases. Frustrating.....

I have not been dx with it. After my surgery I have a lot of pain in all joint areas and bone pain, as well. When I first get up from sitting or sleeping I have trouble starting to walk but then once I get going I am pretty good. Not sure if this is from all that steroidal use in the past and it is just catching up with me! I got to get back to yoga because that helped me when I had UC (before all the surgeries). I never had the pain I am having, now.

Roberta

I think we definitely all go through the "why me's" throughout this whole process. The good news is you recognize that and you are here expressing your thoughts and feelings and reaching out to others. We're here for you!