We all have our stories and I dread saying this....but I top you....but I won't. And now I may be facing a disorder that will fully disable me, disfigure me and then kill me.

But we have 2 choices....be alive or be dead. I choose to stay alive for the time being. Choosing dead can't be reversed. I'm not ready for that. And I hope I never am.

This too shall pass. Self-pity is completely permissible!

gentle hugs..............Jen

I am sorry for you and I hope you can find a soft quiet sunny spot to sit and drink something refreshing. I sure hope you feel better before I finish writing this!!!

You are not alone at all. I wish you a turnaround for the best. I wish I could help!!!

God bless hang in there

51% I'm sorry to hear that for you. I don't want to be dead either I guess I mostly get tired of trying to fix the problems they always seem to require surgery and it feels like why go through that when there just always seems to be more on the horizon. It helps just to vent I guess. God bless you. Gentle hugs back to you. And thank you Linsey for your encouragement too.

I understand how you feel. You can be a very strong person but there is always a moment when you feel that enough is enough.

Hang in there.
Hugs to you.

I get the feeling that my post made people think I want to die. I want to assure y'all that's not the case it's just that I sometimes want to give up on all the treatments and those side effects and give up on surgeries. And yes I get so sad. But not to end my life. Just feel kinda like what's the point sometimes in trying so hard to get better when it feels like I'll never get better. Rest assured I am grateful for my life and all those in it and for meds and Drs. Etc... Just frustrated. Pain pills and pain that doesn't subside make a sad combo. I am a woman of faith and God gets me through every time. I'm so glad to have a safe place here to express myself. I don't like to share too much of this with family because it makes them feel so bad that they can't take it away for me. I just needed to get the depression off my chest. I hope y'all understand. I will be ok. It always feels better just to talk it out. Thanks everyone.

Kimberley, don't forget that almost all medical treatment is indeed optional. Surgeons get paid to whet the knife. I have gotten in the habit of always asking, "What happens if I don't do this?" I have had a number of surgeries too. Some have made things better, some were a wash, and two in particular set off $#!% storms of the most discouraging sort. You can't usually spot those beforehand, but you can learn to be careful, to ask a lot of questions, and to not automatically say "yes" to everything a doctor proposes. If the side effects of a drug outweigh the positives, talk to your doctor about whether there's any real reason to take it any longer. Remember the old line about a sweater being what you put on when your mother is cold?

I am sorry you have gone through so much. I do understand, having been through so much myself!

I remember when Rituxan failed I was in the shower one night, and I was looking at my messed up feet and hands. Remembering the terrible reconstruction surgery I had on my right forefoot. Thinking about the weight I had gained on prednsione. Yadayadayada.

You know the drill!

Anyway, I started sobbing a bit,, just generally feeling sorry for myself. Then the sobbing went to outright crying. From there, to serious crying, through to screaming hysterically. I just totally froze. I couldn't move, I couldn't stop screaming, I couldn't even turn off the shower. I guess it was some kind of hysteria induced catatonia, or something.

Hubby, who is partly deaf, actually heard me and came to see what was wrong. It became obvious pretty quick that I couldn't move. He turend off the shower, dragged me out, dressed me for bed, and basically carried me to bed. He held me all night.

In the morning, God clearly said "NO MORE PITY PARTIES!" Oh, that is what that was! The voice was deafening, and not one you could ignore. I was actually just finishing off my Master of Divinity to become a pastor at that time, so I had learned enough to know I had to obey God!

So I really sat down with the Psalms (again!) and just walked with God through them. Then God showed me the verse that has most helped me realize we all suffer in this life, and how God can use it for good.
It was Romans 5:3-5. I read it in ESV, but most versions bring out the fact that we suffer, which produces endurance and endurance produces character which produces hope. Except, I really didn't want to be this much of a character!! LOL

From the next day after losing it in the shower, I have continued to hold onto that verse. I currently cannot do volunteer work as a chaplain because of the R,, but I am hoping to get back into it, soon.And when the pain gets bad, as it has during these med failures since Feb. 2015, I have really clung to God, and if the pity level goes up, I have to say, "No more pity parties." So I guess I have grown in character, although I confess I would have preferred a much less painful way to do it.

But if you need to vent, then we are here for you - we all have different ways of dealing with the "beast" and the pain and the damage it does to our bodies!

Plus, I always say I don't want to be dead, just for the pain to stop. Sometimes I think there is an overlap between wanting the pain to end, and reaching for a drastic solution like death just so the pain stops! It is not that any of us ever really want to die - but having a break from the pain might really help the mental/emotional game part of the disease.

I knew you weren't being suicidal, Kimberley...you were just fed up with all the complications of this disease and others. But In my world, Ra has been fatal so really you are asking if you should give up and ultimately die from Ra. If you put it that way, I know you'd say NO....I want to live...just tired of the complications and especially surgery. I get it.

But I spent the first 21 years of my life trying to survive a mother who wanted me dead and tried multiple times. I lived in one of the most opulent towns in NJ in the 1950's and yet I ate out of neighbors fruit trees, pulled veggies out of neighbors gardens and in the winter, ate out of the garbage. And yet she still kept trying to kill me. I had to fight to stay alive.

And now, I should feel as if I want to give up. When I broke my neck and faced years of overcoming paralysis, I thought about it. But I am in fight-back mode to this day. And now I possibly face relapsing polychondritis with no treatment...only the symptoms can be treated to lessen the pain and disability. Not fair....but the word does not apply to life. Life is what it is.

So I stay alive and I vent and I seek therapy when I feel like giving up and I try to stay positive. I think anyone with a chronic illness needs to find a good therapist they can see when they do feel hopeless....someone who can listen and commiserate and then help lift you up again. It has been my godsend. We deserve help. We aren't mentally ill...we are reacting to a disease process that drives most people somewhat crazy! RA is crazy....not us.

But it comes down to 2 choices, like it or not and I plan to continue fighting as best I can for as long as I can. Knowing it can kill me makes me want to fight even more. Maybe thinking of Ra as fatal (killed my cousin) maybe that will help you want to fight a little more right now. But in the meantime, consider a therapist who is on your side when times get rough.

gentle hugs...........Jen

Thank you all for your encouragement. I appreciate the time you all took to reply. 51% I'm truly sorry for all you have had to endure. Thanks for being a fighter and pushing through and for being here to offer support and wisdom.

How can you not get discouraged at times? My goodness we all have our limits & yes to put it bluntly just want to throw our hands up & say I give up. Maybe it's just for that hour, day or week, we are human.
You have had an extremely rough road. Life does not stop & on top of this beast that can keep us on a roller coaster ride we deal with what ever life throws at us. So your darn right those times will come where we just want to give up. Doesn't mean on life but on dealing.
My strength comes from God also. Yet I'll question why? When? How?
In his own time answers come, not always what I want to hear but they come. Yet knowing I'll ask the same again & again.
Here's to better days a head. My heart & prayers are with you.
Sammy

hey Kim

welcome around.

just answer me two questions

did you move the washer and dryer up from the cellar yet? and did your family stop asking you to climb 700 feet up into the family monster cab? :)

hey less to work on later. you're bionic.

did you daughter go to college yet?

depot

Kimberly,
You are entitled to complain. May be you need to vent a little more often, we are always interested in how you are doing.
Really hope you feel better soon, and get a brake from all these surgeries!
Lynne

Lol. Depot you crack me up. The washer and dryer are still sub level. But we are going to be trying to sell this darn house it's killin me. Plus yes my daughter has finished her first year pre Vet on the deans list so happy for her but I have a feeling it's gonna fly by and we would like to be able to move when she does for her Graduate schooling hopefully she will be accepted at a school out west which is where we would all like to wind up. And we still have a big ole truck but I bought a stool. Thanks for the laughs!! And thank you too Sammy and Lynne I needed the encouragement and I prob should vent more and not hold it all in it prob wouldn't get so bad if I did that. You know tho how big it rains it poors and I guess all my failing body parts seem to do so in unison so it seems like just too much.

Kim, I am so sorry for your situation. I am not to the point that I find things that unbearable but my heart goes out to you. So glad you have your faith to help you thru. I, too, rely on my faith and just like others, I often question why. Good luck and I want to thank all that responded to you because those answers have helped me realize that I am not alone in how I feel at times.
God Bless,
Wendy

I think we all have to put things in perspective.

Yesterday a dear friend, age 61, died of cancer.

Trust me, my medical issues are nothing compared to what she went through.