Limitations and coping?

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Red_34
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Date Joined Apr 2004
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   Posted 11/25/2008 3:59 PM (GMT -7)   
How did you handle the emotional side of knowing, actually KNOWING, that for the first time that you can not do things like you were able to before??  I am having a hard time coming to terms that my hands are never going to be the same and that they are going to get worse.  I am finding it hard to let go of my independance - just the simple independance that comes from living life - and to let others do things for me such as opening jars, water bottles etc.  Things that everyday is done without so much as a second thought by people that don't have these issues.  I am getting very frustrated, annoyed and angry at how things are coming about!  Sorry for the ramble, just had to vent a bit. mad
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA
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jujub
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   Posted 11/25/2008 4:59 PM (GMT -7)   
I have a variety of aids to help me open bottles - one that's just the right size for soda and water bottles, two others that fit most bottles and jars. I have an extension thingie to help me reach for things on high shelves (since my last shoulder surgery, I don't have full range in my right shoulder.) I wear pullover shirts most of the time because small buttons can be difficult for me.

My joint problems started with my shoulders and hips. For the longest time it seemed almost surreal that I would always have pain and never be able to do things the way I used to for the rest of my life. I guess I just kept moving forward because there really wasn't a choice, until my concept of "wellness" adjusted to my new reality. I cried, I screamed, I thought it wasn't fair and who am I now that I'm not me any more. All the usual stuff.

Honestly, Sherry, I think just time was all that worked.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
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Please remember to consult your health care provider when making health-related decisions.


momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 11/25/2008 5:42 PM (GMT -7)   

Hi Sherry...

This is a hard one! It has been 3 plus years for me and the last time I was at my rheumy appointment we talked about my being able to walk around the mall with my daughter who is going on 12 and when would I be able to do this again? Without feeling like I have been hit by a truck the next day or having to sit several times along the way? Hearing him tell me that at best, I may be able to go for a couple of hours with a few rests along the way was painful to hear.  I'm 37 years old and it has only been a few years and I can still remember when I had energy and didn't have this crazy joint pain! I still think I'm going to wake up one day without it, nutty I know sad   This past weekend I found myself at the mall with my daughter and 6 of her friends and after 2 hours, my hips and knees were feeling it..I felt so dissapointed and angry because I'm taking all of these medications and I still can't get around like I used to. This is as good as it is going to get shakehead While it does get easier to ask for help opening jars etc for me, the physical limitations of walking and knowing running, jogging and such is out..well I'm still trying to accept that.

 

Judilyn has a good point regarding time and I think it depends on the person some of us take a little longer to accept and adapt, I know this is the case for me.  I'm still somewhere in the frustration stage, especially when I have to inject my Enbrel, sometimes I feel trapped by the medications more than the RA, if I don't take them the joint pain will come back full force.

If you need to chat, feel free, we are always here :-)


Red_34
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Date Joined Apr 2004
Total Posts : 23419
   Posted 11/26/2008 6:25 AM (GMT -7)   
I was having the ole pity party yesterday and today I feel a bit better emotional. I think what got to me was that I was trying to get one of those seals off a new bottle of tartar sauce and I couldn't even pull it off when just last month I was able to. I am also just hoping that one day I will wake up and have full use of my hands again. Denial? You bet! I know it takes time to get accustomed to having something else that is going to make life difficult but it seems that as soon as I accept one condition, another one pops up. I feel like these past 5 years have been nothing but trials for me and I just want it to stop!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA
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momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 11/26/2008 9:21 AM (GMT -7)   

Hi Sherry,

I have those parties too! My hands always hurt when I try to open jars and such and after I finally manage to get the thing open, they really ache!! I know it is frustrating.. Hang in there, most of us are in the same boat.


chattycat
Regular Member


Date Joined Aug 2004
Total Posts : 334
   Posted 11/26/2008 11:55 PM (GMT -7)   
Thank you Red for bringing this up! Just today, I stood in the shower, hot water pounding down on my back, and I cried for a long time :(. I've had Crohn's and Fibromyalgia for almost 8 years now, but just in the past year, have been diagnosed with Ankylosing Spondylitis and Osteoporosis. Seems from the latest xrays, that about 4 of my vertibrea in my thorasic spine have fused together, into what the Rheumy calls Bamboo spine. I can't believe just how much pain I'm in. I have a patient advocate appealing to the government to cover the cost of Remicade, so I can start taking it. Right now, for the pain, I am taking a pill that is supposed to last 24 hours, called tramadol. Well, I'll tell you, it isn't touching the pain as much as I had hoped. Some days, like today, there is just NO comfortable position to be in, it hurts to breathe deeply, hurts to move suddenly, gosh, it just hurts to move! I think it's the overall feeling of helplessness that makes me break down and cry. I am really hoping that if I get the Remicade, it will take the pain away. Will it??What I have people help me with the most is bending. Like if I drop something on the floor, I can't get it without throwing my back into painful spasms. And the whole thing of beginning to accept the cards you are dealt, only to have a new crappier hand thrust your way, really sucks!! So, right now, the whole concept of time = acceptance, isn't going over very well for me at the moment. :(

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23419
   Posted 11/27/2008 6:50 AM (GMT -7)   
Chattycat, tramadol never did anything for my pain either and in fact I have a bad reaction to it. I know like with Uc, people with Crohns have to be careful of their pain medications so have you tried Darvocet yet? Or Vicodin? You shouldn't have to be living in this type of pain until another med is approved. I have back issues too but not as severe as you have it so I can imagine how awful it must be! You begin to wonder just how much can your poor body take!? Good luck on getting the Remi - I can't say if it will help you or not since I've never been on it myself. I don't understand why you would have to appeal the process of getting the Remi considering that you have Crohns.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA
To help Healingwell - click here: DONATE
 
 
 
 

 
 


chattycat
Regular Member


Date Joined Aug 2004
Total Posts : 334
   Posted 11/27/2008 1:32 PM (GMT -7)   
Well, the reason I'm waiting for the government, is that I live in Canada, and my only coverage right now is thru Ontario Disability. If I were to pick up the tab, it would easily be over 20,000.00 a year, which I clearly could never afford. It's my Rheumy that wants me on the Remicade, he says there is nothing but that that he can do for me. My Gastro doc says he would go along with supporting that decision, although my Crohn's is not bad enough to warrant taking it just for that.
I am going to see my family doc tomorrow morning, gonna give a urine sample, just to rule out the possibility of a kidney or bladder infection. I am hoping that he can give me something for at least temporary relief of this, it's killing me being in this much pain, honestly, I think I'd rather give birth.
So, this patient advocate person is gathering all my medical info for me ( doc's reports, test results, meds tried and failed) and presenting them to the government in hopes they will cover the cost for me.
I almost wish there was something along the lines of an epidural you could give yourself at home, just so I don't have to feel this anymore. It's scaring me how close to thinking awful things I am, I have never been this close to just giving up entirely..... cry

golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 11/27/2008 4:34 PM (GMT -7)   
I'm not in as much pain as you guys but feel like venting my frustration as well. I have only RA and am on humira, mtx and currently prednisone but after struggling with sore ribs after a bout of pneumonia for the last 10 weeks or so I went for a walk on Wednesday and Thursday woke up with a horrendously painful hip and ankle!!! I feel like can't I have a break now body, Just as one thing seems to settle something else goes wrong! I use a grip mat for opening jars and just running the lid under hot water often helps to open them. My hands are much better on humira, I don't understand why it doesn't work for all my body. You take all these drugs and still there's pain! Really frustrating.

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 11/29/2008 8:14 AM (GMT -7)   
I know what you mean! Cant do things that seems sooo easy that you used to do before. I was just telling my husband lastnight that I am starting to feel so useless. Cause I cant do what I used to do....
But I still do somethings that I probably shouldn't. I just look at it that I am gonna hurt if I dont do it, and I am gonna hurt if I do so I might as well do what I want to do. nono I know shame on me and I might/probably pay more later on but I cant help it.
Even going out dancing with my hubby I pay big time the next day....knees swell,ache,hips hurt, hard to walk....ya know the usual crap.
I am only 33 and my body is starting to act like I am 90ish. Sucks.
Best of Luck Sherry, and everyone. Hope you have a great day. ((gentle hugs))

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23419
   Posted 11/30/2008 5:44 AM (GMT -7)   
Chattycat - ah ok, didn't know you were in Canada. Did you go to the doc? If so, what did they say or give you?

Golitho - you said it! When something finally settles another thing swoops in to take it's place. I have been going thru that for so long that I sometimes just feel like hiding in a corner and staying there forever.

Tyaisa - Hey! I have that very same 90 year old body even though I'm only 38! :) Don't beat yourself up for doing things that you shouldn't. You are only human and once and a while it's nice to be reminded of that by going out and having fun. I love to go out dancing too and I am usually so sore and stiff the next day, but truthfully I don't care because of the fact that I actually had FUN ya know?

What also gets to me is that once I start to enjoy something, it gets taken away from me because I am no longer able to do it. Like for instance, I enjoyed going out, dancing and having casual drinks with friends. I had to stop doing that because I got diagnose with Uc (16 years ago). Drinking and late night outs aggravated my condition. I enjoy doing needlepoint, crochet, knitting - but had to stop doing that because I got diagnosed with trigger finger, loved to play outside in the snow and go sledding, had to stop due to Raynauds. Loved to go to amusement parks and ride roller coasters - had to stop due to herniated and bulging discs in my neck. Love to go bowling - now have to stop due to the arthritis in my fingers..........see the pattern. :(

However, I am still able to do ONE thing I absolutely love and I even got the approval of my neurologist to do it and that is ride on the back of my hubby's Harley in the summer! :)


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA
To help Healingwell - click here: DONATE
 
 
 
 

 
 


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 12/3/2008 4:05 PM (GMT -7)   
I like the idea of riding on that Harley. It's years since I've been on a bike! I find if I have a glass of champagne I can dance, but I know I'm not supposed to drink on my drugs so have to save it up for something special, always much worse the next day... you pay the price. Someone told me white wines are much worse for people with arthritis, has anyone else heard this?
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