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I really hate being me.

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Crohn's Disease
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Posted 6/5/2012 1:22 AM (GMT 0)
I just spent another 4 days in the hospital with a small bowel obstruction. The doc comes in and injects me with 4 40ml of Humira as my starter dose... says you will need to take the two monthly injections from now on. ARE YOU FREAKING KIDDING ME? My SSD check won't even cover the co-pay. I have tried organizations one after the other to get co-pay assistance.. nope, not happenin' "you don't qualify"
The hospital I was in sucked. I decided no more tests, no more blood thinners being injected into my belly, I am leaving no matter if you discharge me or not.
I am to say the least depressed. I am thinking that not waking up in the morning might not be such a bad thing. No more pain. No more anything. Who ever said "life's a b*tch and then you die" sure hit the nail on the head.
Posted 6/5/2012 1:38 AM (GMT 0)
I am very sorry you are going through such a rough time! I just got out of the hospital myself and know it can be more than draining. The hospital I was in also sucked.

Have you tried the partnership for prescription assistance? Here is their website in case you haven't tried there yet. http://www.pparx.org/

Or needy meds site is -  http://www.needymeds.org


I know things seem impossible right now but please dont give up! Tomorrow is a new day and maybe things won't seem as bleak. When is the last time you had your Vitamin D checked? I was pretty low and found myself very depressed but after getting my levels back to normal helped me considerably.

Please take care and let us know how you are doing!

Posted 6/5/2012 1:46 AM (GMT 0)
Lynn,

Your post is extremely moving. You really need to talk to someone that can listen to you intently. It's awful to hear someone talk of dying. Life is so valuable. 

I totally understand that you're certainly depressed with facing such a difficult situation. I don't like to advise counselling as I'm not a big advocate of it. 

I hope you find the strength in a couple of days to put a plan together to deal with your current health crisis. 

If the Dr.s and Hospital you're with "sucked" then you need to find somewhere new that you can get competent help.

The financial burden is I'm sure a big part of your stress. I have no advise there, but maybe family members could offer some temporary assistance. 

No matter how difficut things are right now, things will get better. You must somehow find the strength to put a plan together. Good luck, prayers coming your way.  

Posted 6/5/2012 1:46 AM (GMT 0)
Hang on Lynn. Please let one of the nurses on your floor know how you are feeling. Last time I was in the hospital, the nurse was quickly able to get me something to relieve the anxiety. I see that Xanax is on your meds list. Have you been able to have it recently? I was very very down too. Also, is there a hospital patient advocate or social worker who can help you sort all this out. You are dealing with so much and shouldn't have to shoulder it alone.

I too digest vitamin D and B 12. When I am I'll, mine are very low and this definitely contributes to my depression.

Sending good vibes and prayers.
Posted 6/5/2012 12:18 PM (GMT 0)
Thank you all, this is year number 30 for me with CD. This is also # 30 for constant unstoppable D. Tomorrow my husband also of 30 years is moving me back home to SC or GA Savannah Rincon area. All of my children and grandchildren are there. Most important is all of my physicians the ones who know me and that I trust are there.
I do self inject the B-12 every month now since I too have had to have 3 transfusions in the last 18 months. 3 GI bleeds to go with it and now the obstruction that I knew was coming and these freaking DR.'s ask me at the ER "What can I do for you today? Really?
Anyway thanks for caring.
Lynn
Posted 6/5/2012 1:16 PM (GMT 0)
Glad you will get "home" to have supportive family and docs around you. I was diagnosed 28 years ago. This disease can be relentless. I hope and pray you receive the care--medical, financial, emotional--that you need and deserve.
Posted 6/5/2012 10:38 PM (GMT 0)
I was able to get Humira free directly from Abbott when I was between jobs. Just go to Abbott's website and you can find an application or phone number to call and see if you can get meds free from them.
Posted 6/5/2012 11:03 PM (GMT 0)
Good day Lynn,

I am so sorry that you are feeling so low, after reading your post and you mentioning that you have 3 children, I hope that you can come through this funk for their sake.  I can't offer you any suggestions about medications as I live in Canada, but what I can suggest is to keep posting your feelings on this site and you will always get someone that can offer you some words of support that will hopefully help you through this difficult time.

I was admitted to the hospital 6 or 7 times last year with a suspected bowel obstruction, and each time I got depressed, (which is normal, being in the hospital is awful) but once I was at home for a few days, I snapped out of it.  Give yourself some time, and if you are still feeling really low, try and make some calls so that you can talk to a professional to get some help.

Hope some of this might help, try and keep your chin up Lynn, you have people rooting for you.

Posted 6/10/2012 8:41 PM (GMT 0)
Lynn,
as I read your story the tears are falling down me face. I am so sorry this has happened. I gave up job I loved b/c I can't deal with the pain and the fecal incontence anymore. (fancy words for I poop my pants w/out warning). I have MS. Had to quit nursing b/c my job didn't want a nurse who would fall. Then I stablized, went back to school, got my BSN, MSN, became an NP with a minor in teaching nursing. Thyroid Cancer didn't stop me , I graduated, losing my parathyroid glands and almost dying didn't stop me, I graduated. Now I applied for SSD again, which is no problem but I married the love of my life that has DDD and is on SSD, so long story stort, we will make too much money together to get health insurance. I am looking for another job,lying about why I left the last one. Sorry to go on and on, but when did the system fail us? I am an NP an I can't help myself....I feel soo useless....Can't eat, alway running to the bathroom, look like death(lost 80 lbs in 2years) can't use any meds on me b/c of MS...Sorry to complain...I am sooo sick and tired of being sick and tired. Lynn, I hope you get the help you need. Things HAVE to get better. Again sorry for the rant.
Posted 6/10/2012 9:52 PM (GMT 0)
Thanks Kate: Yes that is my specialty geriatric nurse practitioner. So Sorry for the pitty party. Thanks for listening
Love Annette
Posted 6/11/2012 3:23 AM (GMT 0)
Talk to your gastro dr and tell him what is going on .. if he doesn't listen find a new gastro dr that will listen to you and yes there are companies out there who will help you get the meds you need .. I am currently on Medicaid but told my Gastro Dr that when my son leaves to go stay with his father for part of the summer I will lose my medicaid therefore cannot continue with all this medication I am on and need something more affordable .. he actually listened to me and said he wants me to try remicade and he is contacting the company get them to give it me so I won't have to pay ..

I know this disease can get the best of you at times but there are actually people out there and companies too who are willing to help you just have to find the right people and right company ..
I can't even even begin to tell you how many times I have felt exactly like you do and there are times I have had no medications because no job or no insurance .. so hang in there it will get better just take it one day at a time .. one hour at a time or one minute at a time if you need to .. take care
Posted 6/13/2012 12:08 PM (GMT 0)
I know what you mean and I pray things are better, I could tell you my depressing tales but I wont, :). Just keep going forward and dont worry thing do get better.
Posted 6/18/2012 12:52 AM (GMT 0)
Dreamsky: Doesn't that really stink? Unless I get Non medicaid insurance, my gastro doc won't take me either (last I knew, they were in contract despute with BC BS. There are days my get up and go got up and left between the MS and the CD...but you do what you gotta do,right? I agree with your tag line I am in the bathroom or looking for the bathroom.
Dusty: I am sorry things are so bad for you too...I think I remember reading some of your other posts(you were in the hospital recently or am I thinking of someone else?
I was very good at my job...they knew what I had and put up with it. Now I am stuck with the "Do I tell or not" about the DC, MS, hypoparathyroidism.....
I know i am projecting.....thanks for everything guys...You are in my thoughts and prayers:)
Posted 6/18/2012 2:28 PM (GMT 0)
Have any of you considered using LDN (low dose naltrexone)? Especially singingsupernurse. There's lots of info about how it is useful in combatting Crohn's and MS, among other ailments. It's not a biologic, with all of those side effects. In fact, it has very few side effects. There was a small, promising study at Penn State regarding Crohn's patients and LDN. Like 70-80 percent improvement in CDAI scores and healing of intestinal lining on colonoscopy after 12 weeks therapy. I started on it earlier this week in an effort to avoid Remicade and cancer risks. I am truly hopeful that it can help me, too. Google LDN.
Posted 6/19/2012 5:35 PM (GMT 0)
Thanks I'll have to try something.I'm Looking for a new job and they won't take kindly to me living in the bathroom(if I get it which I hope I do)(Fingers crossed)!
Thanks again!
Posted 8/1/2012 10:16 AM (GMT 0)
Singingsupernurse: I'm a nurse too that hasn't worked in ten years because of crohns..I thought it would be a few months or a year at most but I just kept getting sick with obstructions,obstructions..so many abdominal surgeries and with the last one in December 2011,the surgeon says'see ya in a year or two'..thanks pal! I gave up my dream of working overseas in relief agencies and/or the UN due to crohns..sometimes it seems everything has been taken away from me..BUT..I hang on. Sometimes by my fingernails but I hang on anyway!
We all know this disease is a mofo..pain,incontinence,more pain,dietary restrictions,emotional turmoil! We are all of us very brave.im serious..it takes great courage to admit that 1) I feel like pulling the plug and 2) reaching out and not pulling the plug! I have a very dark sense of humor with this illness..I mean,it's beyond ridiculous really!today is my birthday and I get to have a big probe up my butt!!
I read in these forums for support and not to feel so alone..you really do matter and you may not know me or I, you..but we are connected!!
Posted 8/3/2012 12:05 AM (GMT 0)
Hello, I just read your post, I just started Humair yesterday. The nurse gave me this website and card to apply to and she said if your co-pay is $20.00 let's say if you inrole in this program you would only pay $5.00 instead. Also if something happens and your now unemployed they will help you pay for it, but you half to be inrolled before your unemployed or loose your job. The website is my Humira.com. Ask your GI or nurse for a card you can save alot with it. Hope this help's.
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