Tired of Living

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SherylN
Regular Member


Date Joined Jun 2005
Total Posts : 28
   Posted 9/7/2009 2:05 PM (GMT -7)   
I know that sounds melodramatic as hell, but I truly am just sick of living.  I've been diagnosed with Crohn's since around 1989 and have had two bowel resections (1992 and 2002).  With each passing year it becomes progressively worse.  I have severe joint pain that for a couple of years was well-controlled by Remicade; then I developed a resistance to it and now on Humira injections twice a month.  The Humira has worked well until just recently, and now I'm in agony again with joint pain.
 
A couple of years ago I started to develop back trouble.  Had an MRI done and I have a pinched nerve and two bulging discs (L4/L5).  I have been on pain meds, had three months of physical therapy, and now they want to put in a pain pump which scares the crap out of me. I am seeing a chiropractor who has given me more relief than anything.
 
It's just been one of the weekends where I wish I wouldnt wake up - simple as that.  I am so very tired of this disease and the havoc it wreaks on my body.  My sweet children see my cry, as well as my very supportive husband, and I try to hold back the tears, but it just won't stay bottled up.  I have considered suicide so many times I can't count (and I am bipolar and on lithium on top of the other stuff-I take so many antidepressents I rattle).  I just don't, for the life of me, understand why things have to be this way.  I know that it could always be worse and I have many blessings in my life to be thankful for, but I get so caught up in the bull*** it's hard to remember.
 
I am 43 years old and have to be functional to take care of my children and to work.  I am just at my WIT'S END.  I guess I just needed to type it out.  Thanks for "listening."  If anyone has experience with pain pumps for joint pain/back issues, please let me know.
 
Sheryl

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/7/2009 2:34 PM (GMT -7)   
Hi, SheryN,
I'm not sure if I've seen you post here before, so I will welcome you to the chronic pain forum. We're always sad to see another person in pain, but this is the best support group around for those of us who have to life live with it.

There are a few people here with pain pumps and Crohn's, although I don't have either. If you search some of the old threads you'll probably see some information, but I'll bet some of them will be along soon to post a resonse.

I think we all have those moments when we're just not sure we want to go another day. But in those times I think it's very important to remember some meaning, some reason for staying alive - even WITH the pain and other issues. One thing I can say is you are not alone. And with your family, I doubt you truly want to end it all. Still, people can do things impulsively that can have serious consequences, so I'm glad you're seeing a therapist. And please do use either your local hotline, or whatever instructions your therapist has given you if you DO start to think seriously about hurting yourself. Your family will be devastated. That's important to remember. Suicide does no one any favors.

I think for most of us we need to have days where we lie down and cry, do some journaling (you can rant here!), call a therapist, a friend, a family member - whatever we need to hang on through that day. Sometimes just venting it someone helps.

Straydog has a pain pump, as well as a new pain pump doctor who has really made a difference in her life. You might check out some of her posts until she can get around to responding. She has her ups and downs, like we all do.

For me, I am still struggling to make peace with what life has handed me. But I think that's the only way we can have some sort of a life. If we keep asking "why", well, there's no good answer in most cases other that stuff happens. Bad stuff happens to good people, and it's just about being a human being. So we each decide what we're going to do with what's been lumped on our plate. Don't have to like it, but we may have to eat it!

Don't know if any of this helps, but I did want to at least welcome you and say hello!

PaLady

SherylN
Regular Member


Date Joined Jun 2005
Total Posts : 28
   Posted 9/7/2009 3:07 PM (GMT -7)   
PALady, thanks so much for your words of encouragement.  I just need someone who understands that feeling of wishing you wouldn't wake up because you know you're going to have another day of pain.
 
The only thing that keeps me here is my kids, there's no doubt about that.
 
I'll check out some of StrayDog's posts, I really appreciate the tip.
 
So many thanks your way.
 
Sheryl

Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 9/7/2009 3:22 PM (GMT -7)   
So sorry to hear you are having such a rough time SherylIN..... I for one have had those same feelings too....

I am hear just to say I understand and here to offer you a place to vent all your frustrations...

SMILE.....
Lisa


Splashdancer
Veteran Member


Date Joined Aug 2009
Total Posts : 927
   Posted 9/7/2009 3:55 PM (GMT -7)   
Sheryl, I totally understand your feelings and I am so sorry that you are in so much pain. I know what it is like to just want to feel 'normal' (whatever that is :-) !). The fact that you are seeing a therapist is a very good thing - it means that you really don't want to give up. Instead of looking at tomorrow as just another day to wake up in pain (Groundhog Day?), look at it is as another chance to maybe feel just a little bit better. As long as we have tomorrow, we have another chance. Just as we are not guaranteed to ever be pain-free, there are also no guarantees that we WON'T be pain-free someday. I hope that makes sense to you. Never, ever give up on yourself. To give up on yourself would mean giving up on everyone who loves you too and I know you wouldn't want to do that. It seems like you are taking all the right steps - just keep putting one foot in front of the another. At some point, you WILL find the right combination of treatments. And even though you may never be completely without pain (or maybe you will, who knows!), chances are you will eventually feel better and find the beauty and joy in life again. When that day comes, you will be able to look back and be SO glad that you didn't give up! :-)   You are in my thoughts.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 9/7/2009 4:54 PM (GMT -7)   
Sheryl

I am so glad you have found this forum! You have found a place where people do understand what pain is and how tiring and grating it can be on just everyday living!. You have come to a place where people do care about you! You are not alone when you are here, we will listen and share in your pain and sorrows, we are not Doctors and we can not fix you, but we can support you and help you in many other ways! Some times it gets to be over whelming, we all get that way from time to time, I find that when I get to feeling that way, there is always someone here that can help put things into perspective and give me some good advice. We just all help and support each other in our time of need! I am amazed at the number of times a member here will tend to sense when someone else is in need of support and then start a new thread for that person, and then everyone comes to that persons aid. It happens time and time again on this forum. I think it is because the people here, are so compassionate and caring and sensitive to everyone elses conditions and needs, I hope that you will also find that true for you! I am so very sorry that you are in so, much pain Sheryl, but I don't think you could have found a better place to come and share your pain and problems then right here!
Again I Welcome YOU to this forum!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 9/7/2009 6:12 PM (GMT -7)   
Sheryl
Have you thought or been to a pain management psychologist? they are hard to find, but could be well worth it...
your depression seems severe enough to seek out this help..there are also a lot of newer depression medications,
such as cymbalta, that might be of benefit for you and if that shouldn't help there are others that might, but please let
your doctor know your feeling this way...In the meantime I will hope and pray that you can get a low pain day...
please know we care..
lots of soft hugz and prayers being sent to you!
(((((((((((((((((((((((((((((((((((((((((((((((Sheryl)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 9/8/2009 6:27 AM (GMT -7)   

Good morning SheryIN and welcome to Healing Well. I am so sorry you have to be here but very glad that you found us. I think you will find us to be one the very best forums around. You know if I didn't know better, I would have said that was me writing your post. Boy, have I ever been there and done that. You see, I too have crohns and totally understand the roller coaster you are riding and wanting it to stop so bad so you can get off. I too have done the Remicade route and it just lost its punch for me. I did have to go back on it for a lovely fistula and ended with Remicade induced Lupus. Well, now I am on Humira and it is the very same way so I am now on meds for Lupus. I started Humira Jan of this year and I feel its probably worked the best of any of the limited meds I have been able to try. The problem I have is getting infections and having to stop the Humira immediately. I have probably been off of it more than on it sad but true. Last week I was dx'd w/Psoriasis and understand they use Humira for it. I was given my dx for UC in June of 05 so, yep I truly understand where you are at.

Now you have reached a point with your pain that the pump has been recommended. I have a pump and I absolutely love it it. Now I did not always feel that way. The pump is great because you are not sitting around clock watching, waiting on that next dose of meds, waiting on it to kick in, none of that stuff. Its a constant steady slow release of medication. There is a saying among pumpsters that is so very true. A dr can either make your pump a success or he can make it a failure. By that it means the dr must be very educated in pumps and in the medications that is used in the pumps. You must have both of these in a dr, otherwise the patient gets screwed. I got screwed. My PM dr that recommended the pump to me did not have near the knowledge he needed to be handling pump patients and there was 45 of us. You should always have orals pain meds for BT pain because none of us will ever be pain free. Some drs disagree with this, a good one won't.  You should also be allowed increases in the pump as needed because you will over time become tolerant to the dosage on your setting. It may take awhile but the pain will return and an increase should be given. I have a 4 drug cocktail in my pump and Dilaudud is the pain med used in it. It is a very old drug that works well in pumps and has the least side effects. My former PM dr had my concentration level at 15mg and I received 5mg in 24 hours. Well, at first this worked then it quit qorking. When I asked for an increase he said no. He said you are on the strongest pain medication there is. I was,  but I was also on a very, low, low dose too. But that is  not what he led me to believe. He had me believing I was maxed out on my dose. I was walking hunched over, I could not stand up straight, it was pathetic. I was no better off than when I first started the pump route. If I needed to go somewhere or even attempt to do something, I was unable to do much of anything w/o paying for it severely in the pain dept.

Then he decided to stop practicing PM and go back into anesthesiology. Boy, was that a blessing in disguise. He referred his 45 pump patients to a neurosurgeon here in Ft. Worth. The day I walked into her office she was shocked at the shape I was in. Before she realized it she blurted out, your freaking pain has been so under-treated and you have have been under-treated as a patient, but I can help you.  She wanted to know how I had managed the pain, I said I have become use to the pain thats all. I told her the dr said I was maxed out on my pump and no more increases had been allowed. She informed me I had a very long, long way to go before being maxed out. I was due a refill on my pump, I went from 15mg concentration dose to 37.5mg and I receive 8 mg in 24 hrs. I also have oral Dilaudid 4mg and I can take 2 at a time if needed. Now, I am able to live again like a human, I can play with my 4 yr old grandson. For the first time in 7 yrs I have been able to mow my own yard. Yard work was my therapy when I worked,lol. I could be stressed or in a bad mood and go out and do my yard work to get rid of it. It was good therapy for me. I wil tell you, once you have a pump put in, it is very hard to find another pump dr willing to take you on as a patient. Personally, I think its liability issues. Back when my pump was put in my dr did not bother to tell me this, among other things.

I need to stop here because the length of this post has got out of hand,lol. But there is alot you need to know before hand on these pumps. If you have any questions please ask me, if I can answer it I will. If you want to provide me with an email address to answer questions great, that way we don't take up HW's space. Take care and please keep posting.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/8/2009 8:27 AM (GMT -7)   
 
   Dear SheryIN,
 
     Good morning. My name is Dani. It is very nice to meet you. I am very glad you ve come over tot he chronic pain forum. We love meeting new folks! I do hope you decide to stay and hang out with us. We have "chat night" every Thursday evening. If you arnt busy that night, maybe you can come and hang out with us? Would be awesome :-)
 
     I do not have any experince with "chrons". I know that alot of folk who have chrons have sever abdominal / back pain. THAT, I just cannot imagine what a day for you is like. But!! What I can tell you is I see a strong willed, independant, in creadibly loving woman. That jumps off the page in your post! I wish I had some advie..but sadly I do not. The other ladies will have ideas and suggestions thou. Im "new" to chronic pain. And "new" to this board too. But, I wanted to stop by and say "hi"
 
     It was very very nice to meet you. I hope to get to know you better as time goes by. :-)
 
*huggs*
    dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


SherylN
Regular Member


Date Joined Jun 2005
Total Posts : 28
   Posted 9/8/2009 9:21 AM (GMT -7)   
I can't begin to convey how much all of you being so supportive means to me.  I am sitting here with tears in my eyes after reading your kind and loving posts.  THERE ARE PEOPLE WHO UNDERSTAND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 
Going to the chiropractor today for the back, and have a call into my gastroentrologist.  I'm hoping he'll call me in something for pain until I can see him, which would most likely be Friday. I think he will not, because he is a recovering addict and is absolutely adamant about pain meds.  BUT, I have not asked him for anything along those lines for 2 or 3 years when the Remicade stopped working and I had a couple of months of severe joint pain.  When I see him, and relay that I might be having pain he'll screech "why didn't you call me!?" Duh...because you act like I'm the drug addict instead of YOU?  I make him sound terrible but I love him dearly and he has been my crohn's doc forever.
 
All I know to do is get through today and try not to cry in front of my co-workers.
 
StrayDog, I would love to talk to you off the boards....
 
Thanks everyone,
Sheryl

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 9/8/2009 4:16 PM (GMT -7)   
Sheryl, not a problem I would be more than glad to talk to you. I have free long distance on my home phone so, if you would rather talk by phone not a problem.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 9/8/2009 6:31 PM (GMT -7)   
Hi Sheryl,

I too want to add my welcomes & support! It sounds like you are going through some tough times. I think we can all relate to what you write. Having a chronic illness/chronic pain is absolutely exhausting, both mentally & physically. It drains the life out of you. It takes so much more effort to do each & every thing and make it through each day that it consumes you. It is so hard to do day in & day out!

I do hope that you are seeing a therapist. I sometimes find that talking helps me to relieve some of the frustration, anger and sadness & refocus. Of course you can talk to us here any time! While we may not all have the same conditions, we all have pain & that unites us. We do understand & we want to help!

hugs,
Skeye

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 9/13/2009 11:17 AM (GMT -7)   
 
Sheryl,
I often wonder how we find each other...with so many forums and websites for CP....how on earth can we all end up here? I can say it's fate...I know when I was at my wits end if it hadn't been for thie site I would have gone over the deep end.  And now that I can help pass the strength to another I am so thankful... This site is like no other on the internet... We are a real family and take care of our own...but if someone comes here and tries to get one over...watch out!!!  So, you are among friends here and can pretty much say what is needed without fear...
 
We have all cried, laughed, yelled, ranted, and told stories here..it's just a great place...so WELCOME....
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/14/2009 11:14 AM (GMT -7)   
I have felt this way myself! Life can seem pretty bad when your living in pain all the time 24/7 for several years. Hang in there!

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/14/2009 11:16 AM (GMT -7)   
Also, thank God for sleep!...or I would have been gone a long time ago!

Linx
Regular Member


Date Joined Nov 2009
Total Posts : 82
   Posted 12/1/2009 1:49 PM (GMT -7)   
Not sure I can be of any help as I'm new here, but being bi-polar, depressed and having cp well "sucks"....I've been through the routine with dr's, physical therapy, chiro's, you name it. I have days when I wake up suicidal and yet come to these posts and walk away feeling better about what ever....as new as I am these people bring hope to me. They have ideas that I would never have thought of. My thought is "don't give up because you never know what's around the corner". I see a new Dr. in a.m. so there might be hope....I do know one thing and that is the sun will come up in the morning! I will forge on....I hope you will as well.....

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 12/1/2009 3:10 PM (GMT -7)   
Hi SheryIn:
 
I, too have an intrathecal pain pump as well as a spinal cord stimulator, and when doctor's first mentioned the pain pump to me, I was terrified as well, because I was completely uneducated about them and had a lot of pre-conceived ideas about them.
 
Once someone explained how they worked and answered my questions I literally said to my doctor "Why didn't you suggest this a long time ago".  I would not be here if it I didn't have my pump.  I am going through a very difficult time right now because my doctor is not very experienced in the pharmacology aspect of the pump, and has admitted that I am at a point where I need someone more experienced, but I am having a tough time finding a doctor that is willing to take on a patient that has a pump from another doctor.
 
You couldn't be in better hands with Susie (Straydog), she has given me the hope that my pain can be controlled if I find the right doctor, and has tried very hard to help me do just that.  I haven't found him/her yet, but I will!  
 
I also would be more than happy to answer any questions you may have about either device, or just an ear when you need to vent, or a shoulder when you need to cry.  My husband and my 6 year old neice both have Crohn's as well, so I do understand to some extent what you are going through with that as well.
 
Hang in there, we are a family here, and you are now a part of that family!  Please keep us informed of how you are doing.
 
Lorie 

babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 12/1/2009 4:28 PM (GMT -7)   
 
 
Hi Sheryl - Hope Your Having A Better Day Today.
Living In Constant Pain Is HARD. I Have Kidney Pain / Renal Colic - Its Not Fun At All. I Too Am On Antidepressants.
Think Of Your Beautiful Children - Do It For Them :)
Remember Tomorrow Is Another Day,  
Love Erin
XOXO
 

Loin Pain Haematuria Syndrome  - A Painful & Rare Kidney Disease .
 
 ^-^
 
When I Met You Boy, My Heart Went Knock Knock;
Now The Butterflys In My Heart Wont Stop Stop;
 
Just Dance' Gonna Be Okay.
 


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 12/2/2009 4:33 AM (GMT -7)   
Sheryl, welcome to our forum. Sorry to hear your pain levels have gotten to this point. With two herniated disc I can relate to the amount of pain you are going through. Has your doctor suggested any injections in this site. I had fusion done on L-4/5 but now have a buldging disc at L-2/3 which gives me alot of problems now. My PM doctor gave me an injection at this site and I received two months of relief. I know two months doesn't sound like a lot but it is better than no relief. We are now starting again this month with an injection at L-5/S-1. These will show whether I am a candidate for nerve abalation which damages the nerve enough to stop pain signals to the brain. If we can find the nerves that are causing my pain hopefully the nerve abalation or however it's spelled can give longer relief.

Another thing my chiropractor found was that with the herniated disc at L-4/5 caused a misalignment in my spine making one leg shorter than the other while standing. I started wearing a small lift in my shoe to correct this and it did help with the pain radiating into my hip. After my fusion I had my legs checked again and they were both the same length so no more lift in the shoe.

You take it easy now and don't give up. If you need to vent feel free to come here. We can't always answer all your questions but we're all in the same chronic pain boat and can understand where your coming from.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3

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