Tired of always being strong *long vent*

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Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/22/2009 8:00 AM (GMT -7)   
After reading Flowery's post about getting disability and the hearing of the difficulty so many of you have had, I have been thinking ALOT.  I am currently considered to be in remission.  Does this mean that I feel great all the time and can easily get on with my life, NO!!  I have had two resections, and because of these resections life is really different for me.  These resections have caused me to suffer alot of mechanical issues, basically I just don't digest things the same anymore and my guts are now extremely delicate.  I have also had a least 8-9 other surgeries for other issues, most of them being connected to the damage Crohns has done to my body.
 
Don't get me wrong, I know others are much sicker than I am, but I am really tired of being strong.  Everyday when I wake up the first thing I have to do is take a anti-nausea med along with part of my pain pill just to get started.  I also, suffer with alot of joint pain.  (Osteoarthritis & Fibro) I wake up everyday feeling various levels of crappy.  Some days are better than others, but more often than not it is an exercise of telling myself "okay you can do it".  I always have to spend at least 15-20 minutes in the bathroom which leaves me a little shaky afterwards.  I go and sit on the bed in our spare bedroom and put on a heating pad on my gut while I do my makeup.  I usually will allow myself 20-30 minutes to do the makeup and try to calm the guts down.  I get dressed and take the rest of medications and the rest of my pain meds and out the door I go, also with the heating pad on my gut until I get to the office.
 
I really like my job and love the people I work with/for.  Everyone pretty much knows my history and most are very understanding, but I am sure they don't want to hear how crappy I am feeling.  But I am so tired of sitting at my desk for 8 hours a day trying to ignore the fact most days that I feel like crap and keeping a smile on my face.  I am very careful with my diet and almost always eat the same thing everyday in order to keep myself feeling well enough to at least fake I am feeling well enough.  Hope that makes sense:)    Its not only the guts that are a problem.  Because if the guts aren't giving me grief, then its my joints causing me grief.  And then there is the need for two knee replacements that need to be done too.  Keep putting that off, because I really can't deal with anything else right now.  So as you can see, if its not one thing its another.  And then there are all the supplements that might be helpful, but of course because of my sensitive gut I can't tolerate those either.
 
I am not depressed, just sick of being sick.  Its just that after over 30 some odd years with this disease , it gets to you after a while.  My friends realize how miserable I am, but bless their hearts they always say, "Can't you just go on disability?  Surely, you are sick enough for it."  They are right, I probably really should be on disability.  But  they just don't understand how hard it is for us to get it.  You have to be just about dead before you can get it.  And tell you the truth, I just don't have to the energy to fight and jump thru all the hoops with the Social Security department.  Just trying to put one foot in front of the other everyday takes all the energy I have left to spare.  I even mentioned my being tired of fighting the illness with my family doc recently, and he said well if you retired, you would probably be bored in no time.  Maybe, but I sure wouldnt have to push thru feeling like crap, and could lay down and rest when I needed to.  As soon as I get home everyday, its almost always to the couch with my heating pad, taking a nap before I go to bed.  Poor husband hardly gets the attention he so deserves.  But he sooooooo understands and is so supportive.  I am thankful for that goodness in my life.
 
I am not sure if I am looking for advice or not, maybe just needed to vent with those who truly understand.  I am just really tired of being forced to push thru my illness, put a smile on my face, and act as if all is perfect.  It just seems as if everyday has some pain or discomfort in it.  Thanks for reading this and thanks for letting me vent.
 
Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/22/2009 8:10 AM (GMT -7)   
30 years...............I've had enough and it's only been 6 months, you are more than entitled to feel this way, you need a big hug in return for all of the ones you give out. xx
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (Doc unsure if it's Crohn's).
2 fistulas, 1st op july 2009, now the proud owner of a seton, ?awating sugery for 2nd fistula.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, Probiotics, zinc supplements, Cod liver oil.
Past meds: prednisolone, colifoam ememas.


Stasi
Regular Member


Date Joined Jul 2009
Total Posts : 36
   Posted 7/22/2009 8:21 AM (GMT -7)   
I too am sick of being sick after just 6 months. I feel so guilty all the time that my wonderful boyfriend has to be so supportive all the time. I just really want to be able to make him smile and stop him worrying about me. The thought of having to put up with this for the rest of my life is something I'm not sure I'm ready to deal with yet.

I'm lucky, for the past week I've been able to come in and have a quick rant and people in my office about how I feel. Because of the time of life we're all in everyone has a bit of a morning rant about hangovers and late nights. It's really important to have someone to complain to sometimes without feeling guilty afterwards.

This forum seems a wonderful supportive place to be able to do that. And you seem to be a big part of making it that way.

Let us be strong for you and send hugs your way!

((HUGS))

Anastasia.
Diagnosed July 2009.

Currently taking 2g Pentasa twice daily.

Waiting for first doctors appointment to get some information and treatment, been threatened with surgery already, but hoping to avoid this through some sweet talking with my Doc.. when I meet him.


KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 7/22/2009 9:49 AM (GMT -7)   
Hi Nanners,
 
I could'nt agree with you more.  I too have crohn's for the last 30 years, and like you each day is a struggle.  I very seldom wake up feeling 100%  my joints ache. I'm like an old engine that needs to be oiled.  Once im up and take my medicine I start to feel a little better.  I get people saying to me " how do you cope with diarhea every day".  Well I just do ! cos  I dont have no choice.  Don't get me wrong I am a very up beat person most of the time but sometimes I wish I did'nt have this disease.  I have a very supporting and loving husband also and 3 wonderful boys (well young men now) who are great.
I really have a lot to be thankful for.  Im sending you the biggest HUG from Ireland Nanners :-) :-) :-) :-)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/22/2009 9:54 AM (GMT -7)   
Wow Keano we are very much alike. I too generally will start feeling better when the meds kick in, but there are some days that I can't wait to get back home. I think the description of an old machine needing oil is a good description. Like you I have a supporting and loving husband, only difference between you and I, is I have 3 grown daughters.

Thank you all for your hugs, they are really needed. Sometimes this darn disease just beats you down sometimes, and like I said I am tired of having to be strong all the time.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 7/22/2009 10:00 AM (GMT -7)   
smhair  I'm sorry you're having a bad day and I'm glad you trusted us all enough to tell us about it.   Now, if you'll pardon me, I'll do a bit of venting myself. 
 
I feel somewhat the same, maybe not quite to your depth though.  My husband has been out of a job for over 3-yrs.  I work full-time and then a part-time job just to make ends meet.  I don't get to make the choice NOT to go into work everyday.  If I don't do it - the household falls.  My husband is supportive of my disease although I can tell sometimes that he is sick of hearing about my latest symptom.  I know he made an honest effort to find a new job (he got let go after 15+ years at his last job) but has been unsuccessful so he decided to start his own business.  Fine, however, it's sure taking a long time to get up and going.  He suffers from depression and so sleeps alot.  I don't get that luxery because like I said, its either me or we fall.  (my youngest just graduated HS and still lives at home).  Even though I'm extremely tired due to the disease and the drugs needed to manage the disease, I crawl out of bed every morning at 5:20AM while he sleeps until 2:00 in the afternoon......sometimes, I truly resent that.  And, do you think anybody else in the house could do the dishes, the laundry, clean the bathroom, vacuum, or anything else?  Of course NOT!  That's left for me to do also.  Grrrrrr....... okay, I better stop now cause I could really go on and on. 
 
Thanks for listening and I'll pray for you and wish you all good things.  You give me a lot of inspiration because you've not only dealt with your Crohns longer than me, but you've had complications from it that I haven't had to deal with yet.  You're a star in my book!   yeah
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.  Currently have C-Diff.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 7/22/2009 10:23 AM (GMT -7)   
I understand too Nanners - it is a difficult thing having crohns. I work full time and peolpe say to me things like "I would never know you were ill". or "you are always so strong - I couldnt be like that if I had your problems" As well as crohns I have liver problems, am under the hospital at risk of genetic breast cancer and also have had cervical cancer. And then on top of that I am very clumsy and have broken both my foot and my toes or seperate occasions in the last 3 years.

I sometimes feel like I am on an ill health merry go round and I cant get off. I think we all have bad days when everything just gets on top of us. You sound like me in some ways, stick a smile on your face and get on with it sort of person. I think we are all entitled to have days when it gets to us. On those days I try to treat myself, I have a long soak, watch something I like on tv, chat with a friend who makes me laugh.
Hopefully you will wake up tomorrow and you will feel it is a brighter sort of day.

((((hugs))))))
Diagnosed 2005.
 
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 7/22/2009 10:28 AM (GMT -7)   
Gail...I'm at 19 years and starting to feel the same as you. The husband is so wonderful, I push on when i know he would understand the need to stop. That fake grin in meetings so no one knows how crummy the day is. No big issues, just daily ache or pain or inconvenience. It is wearing.

I want you to keep telling us when life is too crummy to smile for everyone. i will always understand and listen. And don't be afraid to let it show to others sometimes. You are allowed to be sick sometimes just like any "average" nonCd person. You can have a bad day and others can know about it.

I know you don't need one more thing...but the knee replacements might give you a little spring back. My father in law dropped in age by ten years with his one knee replaced (we can;t get him to go back for the second--he's older and afraid). Another friend who has a chronic illness had a knee replaced and it gave him one less thing to feel every day. That was great for him.

Keep talking...we will always listen and empathize.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 7/22/2009 11:22 AM (GMT -7)   
You are a very special lady. Your posts are read the world round.Your hugs are felt by all, I feel sure. A special prayer has been sent for you. Be good to yourself!!!

Mary Lynn


MaggieLou
Regular Member


Date Joined Apr 2008
Total Posts : 31
   Posted 7/22/2009 11:28 AM (GMT -7)   
Nanners,
 
We must be thinking the same thoughts.  I have also had Crohn's for over 30 years, 35 to be exact.  I also have fibro, arthritis (Crohn's related), and several other health issues.  I have worked at the same place for 33 years and they are very understanding, but only our fellow Chronies really understand. 
 
Like you, I am sick and tired of being sick and tired.  I just had a visit with GI on 07/09 and will now be injecting Humira weekly.  I guess I'm feeling sorry for myself.  A person can only deal with so much. But like you said there are others out there that are a lot sicker than me.  The only way I have survived is because of my supportive family.  I don't know what I would have dones without them, especially my husband and sister.
 
And the disability issues, people I work with don't understand why I don't quit and apply.  Like you, I just don't have the strength to fight that battle.  It really angers me that we must prove how disabled we really are, when others have no problems at all.  I have a relative who has arthritis in his back.  He was approved for SSD in 6 months.  I also have arthritis in my back, as well as two fractured discs and two herniated discs, but I continue to work.  I really cannot risk being without healt insurance.  I could do COBRA for 18 months, but it could take years to get approved for SSD.
 
Please take care and I really understand how you feel.  Wish I could give you real (((hugs))). 
 
Susie
Susie
CD since 1972 (three bowel resections), Fibromyalgia, Inflamatory Arthritis, Degenerative Disc Disease, High Blood Pressure, Depression, Acid Reflux, Meniere's Disease
Humira since 04/07 for CD, Prozac, Diovan, Cardizem, B12 Inj., Prevacid, and Lortab and Ambien as needed for Fibro
 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4099
   Posted 7/22/2009 11:42 AM (GMT -7)   
Hi Nanners,
You are such a big support to so many others! I think it is healthy to vent and let it out! I am not as ill as many on this site, but I do have to get up at least two hours before I have to go anywhere, because it takes me that long to go back and forth to the bathroom. I am wondering if your hubby or a good friend can help you with applying for SSD. It sure seems like if you could even cut your hours you would be so much better off! I have a friend with Crohn's and it took her several years but she did finally get disability, and she really needed it! I think persistance pays off....it is definitely worth a try. Sending hugs and good wishes,
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/22/2009 12:18 PM (GMT -7)   
(((hugs))), Nanners. You have always been such a source of support and empathy and understnding for us, now it is our turn to be there for you and we are grateful we can be here for you.

ISF, YOU need an attitude adjustment. The graduate can get off his duff and help out w/the housework and the cooking! Makes no difference if he has a job or not. YOU have a job, two jobs, and you've been doing it. And be sure you are not making excuses for your husband. Depression is a terrible thing - but - HE can pitch in w/the housework and cooking too. Quit "enabling" them and making excuses for them. You certainly don't abuse or even make excuses for yourself, why do you do so for them? Let the housework go, don't do the cooking. Let them go hungry. Your gut will often do well on a nutritious liquid diet.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 7/22/2009 12:22 PM (GMT -7)   
(((HUGS)))
Nanners, definitely understand how you are feeling. I am only at 12 years and feel like I could just give up almost everyday.
Go ahead and vent away!! You do not have to be the strong one all the time!!

Disability has been mentioned to me this past year by a few people. Like you I don't feel like I could deal with the stress and really financially I do not know how we would do it.

I hope you are able to work something out that can work for you.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.
Fibromyalgia (allergic to Lyrica)

Tried: Pentasa, Cholestyramine, Asacol

Presently taking: now on Remicade, Imuran, probiotics, calcium, B12, nortryptiline.
For asthma I take Advair 250, singulair


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 7/22/2009 12:29 PM (GMT -7)   

My heart goes out to all of you who are able to push through and go to work every day. I consider myself incredibly lucky that DH can support our family without me working. Because it was really difficult when I did. People seem to think remission means you are completely back to normal, and feeling great. Just not true. Even though I'm in remission now, I still have symptoms EVERY single day. I still have to watch what I eat, and where I eat it. I still wake up every morning cramping up a bit. I still spend my fair share of time having the good old D. When I worked I also ate the same safe foods every day, and even then I seemed to flare up WAY more then I do when I'm at home. By 3 pm I'd want to crawl under my desk and take a nap, feeling just drained and tired.

Getting up early for some reason makes all these things worse. Had to get up earlier then usual yesterday to take my son to an eye doctor appointment. Spend at least 20 minutes in the bathroom, with the worry of if I'll be okay enough to even leave the house. We get there, and while were waiting the guts start to cramp and rumble. Oh great, that's the last place I can get sick. Not even sure they had a bathroom around that I could use. Plus my son is sitting there waiting for the doctor to come in, not like I can get up and leave. All the little things "normal" people take for granted I guess. So I just sat there and dealt with the pain, and thinking about what I'd do if I mess myself. Real fun!

So ((((HUGS)))) to you Nanners! I feel ya, and you totally deserve to sick of being sick. I've only had this for about 13 years, but we all deserve to be able to lay down with our heating pads when we need to. It's not like we asked for this DD.



~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/22/2009 12:43 PM (GMT -7)   
I have to say you all made me cry. Thank you for being there for me and loving me as only a fellow Crohnie can do. It's means so much to me to hear how much you appreciate me and that you understand my feelings. To be honest this is not just a bad day today, but seems to be getting a little harder as time goes on. Not sure if its my age (51) or if its all the side issues we have with Crohns, but the fight is starting to get a little harder lately.

I think if I did not have this forum to come to everyday or the love of the most amazing man in the world, I would just crumple up and fade away. So again thank you my friends, I don't know how I could do it without you.

Hugs to you all,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

KEANO
Regular Member


Date Joined Sep 2008
Total Posts : 76
   Posted 7/22/2009 1:35 PM (GMT -7)   
Gail,
 
I too am 51 and I think a lot of hormones are jumping around our bodies at this age, i.e. the dreaded menopause, so that alone accounts for mood swings and feeling down as well as dealing with our disease.  Its not easy, but we have come this far im sure we will see it through to the end.  As i say "I can only deal with what's in front of me at any given time" so chin up and keep smiling and we will all get there :-)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/22/2009 1:46 PM (GMT -7)   
KEANO,

I can honestly say its not hormones with me. I had a complete hysterectomy at 36 and take my little estrogen pill at night to keep the hormones in check. But I am sure alot of women our age have that to deal with too. Thank God I don't have to deal with that too with all the rest of the crap we deal with.

Just trying to keep my chin up and keep plugging along:)

Thanks again for your kind thoughts!

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 7/22/2009 2:00 PM (GMT -7)   
And here's where I add a few cents worth. Nanners is da best. She always has great advise on how to continue in a certain direction. Also...when it comes to the disability issue. Since we all are so sick and have talked to others like us who are maybe sicker...you just don't want to take the disability route. My personal standpoint is that I am only 28...I don't care how sick I get or feel or whatever. I should do what I can since I'm not as bad as others who REALLY need the disability. Which I think lingers in the minds of all of us who work. We fake it. 'Course there is a phrase called fake it til you make it. Sometimes just faking the happy mood can bring it on for me. But at the same time...I hate the daily stuff I do so I can go to work.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa (and much mental screaming)

Trying to hang in there until January so I'll have some insurance and can visit a rheumy, neuro, GI, primary, pain control, and possibly a shrink so I could stop crying and living in my own lil pity party. :-P


elexis
Regular Member


Date Joined Feb 2003
Total Posts : 101
   Posted 7/22/2009 2:11 PM (GMT -7)   
Gail, I wake up every morning feeling just the same way....I wonder how I push myself or even con myself into thinking today will be a better day...I sometimes just sit back and cry cause I know It isn't. Seems when One thing goes wrong everything falls with it....It takes Strength and courage for all of us Crohnies, no matter what the degree of problems we have it's not an easy life but, we soldier through it for the next GREAT day... I know how u feel and empathize w/ u in every way....The GREAT thing is this place to help us get through the day when no one else understands, u do...So I hope You feel better and keep the chin up because we all need each other.....BIG HUGS!
Dx w/ Crohn's Disease May 2000
Asacol 400MG
Small Bowel Resection November 2008

Dx w/ Hypothyroid 2001
Medication: Levoxyl 88MCG


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13469
   Posted 7/22/2009 2:32 PM (GMT -7)   

Nanners I don't hang out much here but am over at chronic pain forum. You have always been one to give us all a big boost when we needed it and you have provided many of us a wealth of information when needed. I totally understand how you feel. I have about 27 yrs worth under my belt. 20 yrs of not being dx'd and then finally 7 yrs ago all h*** broke loose. I was around when you had your surgeries and remember what all you were going thru. I am still chasing the big remision guy, yes many days I feel like giving up.

I did go out on SSD in 04 at the insistance of my gi who is as conservative as the day is long. I fought it and fought and I ran out of fight. I would give anything to be able to work. I cannot tell you the difference in money what it does to you, but I will say this, my dr had my best interest at heart and it took me awhile to grab onto that one. Do not get me wrong, I am very grateful for my monthly check but you know what I mean.

I am putting off my two new knees too. Wonder if we went together we could get a nifty discount. I am struggling with Lupus  from Remicade and now doing Humira. One thing I have learned this disease can get you coming and going. Please take care and I will try to get over here more often. Hugs coming your way.


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.


loki23
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/22/2009 2:55 PM (GMT -7)   
Today is my first day on this website/forum. I think I have now cried at least 5 different times while reading through everything (at work). I am amazed by the love and support, knowledge and advice that is out there. Thank you everyone. I only wish I had found you sooner.

And to Nanners,
All of us need to vent. What we say out loud helps everyone. What we say out loud also helps us deal and cope. You have given me the strength to vent as I am one who has been taught that self-pity gets you no-where. Doesn't matter if it does or doesn't.....sometimes venting is all you have and need. Hang in there and continue to be strong.....And, I can completely relate. I am also just sick of being sick.

I am now onto #6.
May all of the arms in the world connect and embrace you in one universal hug.
Lissa
 
38 yr old female diagnosed with Crohn's in lower colon in 1999 with one stricture
Also have anemia and Crohn's related inflammatory arthritis
 
Currently on Humira, one injection a week for the last 2+ years
Vitamin D, Fish Oil, Bio-Dophilus, Glutamine, Glutegenics, Caprylate Complex, Inflammase, Ultramax InflammaX, Ultra Meal
 
Past drugs:  Asacol, Pentasa, Prednizone, Remicaid, Methotrexate, Imuran, 6mp
 
"Yesterday is gone. Tomorrow has not yet come. We only have today. Let us begin."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/22/2009 4:21 PM (GMT -7)   
(((Nanners))) I think a problem with chronic illnesses like Crohn's and fibro is that people (and we ourselves) expect us to be *better* when we are supposedly in remission. The problem is that these illnesses do so much physical and mental and emotional damage, and I think it just gets harder and harder to bear with time.

What you really need is some time out and a holiday, I think... but the problem is that you'd have to take your body with you. Relentless, isn't it?

I'm sorry I don't have any wise words to share, but you do have my sympathy and empathy. You have good reason to be tired.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


kyle Nelson
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 7/22/2009 4:40 PM (GMT -7)   
"I am very careful with my diet and almost always eat the same thing everyday in order to keep myself feeling well enough to at least fake I am feeling well enough. Hope that makes sense:)"

wow. make sense? you just, like, reached me on a level that i cant even describe.

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 7/22/2009 5:22 PM (GMT -7)   
Thank you for saying what so many of us are feeling--and thank you for giving me this opportunity to tell you how much you mean to all of us at this forum. Your sane, strong, compassionate voice is very important to all of us.

I was diagnosed ten years ago and was suffering with symptoms for five years before that, so I've only been halfway down the long road you're on. You're right--we're strong because we have no choice. I realized yesterday that my mantra, every time I'm rushing desperately to park and run for the restroom (always at the very back of any store), is "Be brave, be brave, be brave."

We're all incredibly brave and incredibly strong--and most people have no idea how incredibly difficult it is to be living with this disease. I'm so proud of you, Nanners, and so proud of all of us.

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 7/22/2009 5:54 PM (GMT -7)   
Gail -- sending you a giant HUG. Glad this forum is a help to you the way you are to all of us.
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