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I wrote a very long and tearful post (in my head) but decided not to post it (may have pushed others over the edge)...

The bottom line is that I am in such constant pain, can barely walk, sleep is no relief and work, which is my passion, has me in tears...can barely get there, subways are torture...walking which I love scares the daylights out of me now and I am using a cane.

There is no relief anywhere. I am now getting red, scally patches on my body ( face and elsewhere).

I cannot plan a vacation with hubby because I can no longer walk around, I have cut my work scheduel down to 2.5 days/week and even that is killing me. 

I am only 55...is this it? Done? No more life...just ever increasing pain in more body parts...? Even eating is no pleasure any more because my taste buds are gone. 

There are days when it is so hard to remain optimistic. 

Just feeling like there is not light at the end of this very long tunnel. 

Sorry if I am not my usual optimistic self but the pain is insane.

Sharon

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Sharon - it's ok not to be optimistic.  I found some humor on a youtube video by Alan de Botain (that's not how you spell it) - he is a brit and has one on "the power of pessimism" - I found it very helpful as I've been feeling really sick too- just so weak and almost bed bound for the past 2 or 3 weeks. Yes, I think, "this is it" - so, I try to go, OK, if this is it..this is it.  I can't control it.  We all go sometime - this may sound harsh, but it's the only way I can cope with it.  Then I panic too.  So, I go up and down but mainly try to keep my mind occupied and sleep a lot. I am having lots of bad symptoms, but severe pain not one of them this time.  That pain is awful - do you have a narcotic for it?  Can your GI stand it?  I hope so.  You have to be able to sleep.  The red patches are infuriating - my dear friend who just had a great experience (seriously) with follicular lymphoma - great outcome - now has broken out in huge red welts all over - derm. is trying to fix, but so far, nothing has worked.  She is miserable and in pain and feeling the same as you are.  I would weep - and if I get a bad diagnosis, I'm sure I will - but what the hell can ya do?  Hopefully, you are experiencing things that will pass.  I know you love your job and you identify with it so much...but backing away from working is not resigning from life - in fact, I found an entire other life when I quit working 7 years ago...it took years to not feel guilty that I was not "contributing" - I mean years....and then it was like a paged turned and I paint, read, knit, try to help out neighbors etc. when I am feeling well, and just live a sort of simple life at home....and the irony is that I was so tied to my job - I thought my job was me and the only reason being on the planet was to always help others.  There is a lot of nonsense out there on this...such as quotes such as "if you stop contributing, you start dying" - this is rubbish if you are chronically ill.  I can't believe I bought into that and beat myself up for years about it.  Besides, you do contribute - to us here on the forum - you have helped me soooo much I can't describe it.  Now, I am going to send up a prayer (whether you believe in it or not) for you that you are going to get through this and have many years with your hubbie left....but I really do think it may be time for you to just slow down.  I hope you can first and foremost get relief from the pain - I would beg for help with that.  If it meant going into ER for an IV drip for awhile, I would do it....depending on level of pain.  You can only take so much and why suffer when you can get help for it?  I need to take my own advice on that one - I tend to want to suffer in silence at home...I am thinking of you - you are so wonderful.  I am so sorry you are suffering.  I pray it's not "the end" - but please, please - "not working" does not mean "not living" - give it some thought...once you are not in horrific pain. Hope they can figure out the skin issue asap.

Thanks Angie

I am feeling so helpless. Not my favorite feeling.

It used to be 'just' the hip, knee ankle etc but now my neck and shoulder are involved too...the whole right side. Turning over in bed is torture.

No relief. Last year refused pain meds (was still on high dose NSAIDs) now I can't survive without them.

I do non narcotic...keeps me head clear but they don't really touch the pain, just dull it slightly.

Yesterday I made hubby drag me to Ikea, short-cut it through the whole place and went strait to what I needed. Then the long line at the cash...I cut the line with my handicapped i.d. 

Some young idiot made a nasty comment...it broke me (something about 'handicapped people' and staying at home, being a pain...) Hubby got pissed and yelled back and I wanted to crawl into a hole.

It was my 2nd outing in 4 weeks other than work. I regretted it...wanted to die from humiliation.

Its bad enough to watch my body fall apart this quickly. But to be humiliated on top of it whenever I try to do something...demoralizing.

I see the specialist in 10 days..terrified that they will say nothing doing, can't help. 

Hubby does everything for me now. Laundry, fills & empties the dish washer, shopping, changes the bed...he is 14yrs older than me. Demoralizing.

Sharon

This is so awful and I am so sorry....it is demoralizing - my husband does most everything for me, too.  The Ikea guy was a jerk - what a JERK.  I'm impressed that you went to Ikea - that's been on my "to do" list for months - can't even get the energy up to do it. 

That kind of pain is so hard to live with and I wish I had a magic answer - I'd be a fool to say I did.  I understand not wanting to do narcotics....at some point, you may choose to...but you try to put that as a very last resort type of idea in your head when you live with chronic pain.  I do the same thing. 

The fear of going to doc and hearing, "we don't know..can't help" is awful...as many on this site can attest to...doctor and doctor - no relief..and then, for many, eventually there is a breakthrough.  But the battle to get to that point becomes harder as we age- obviously.  I also feel so guilty because my own parents are still alive and have been through so much and they seem to do better than me.  I know I am probably only hearing a lot of the good things because that's how they are - very proud...as in, "been in hospital for 2 weeks"....to "did x, y, and z" after getting out two days later...I'm sure it's to not worry me. 

I am here and I know that does not fix a damn thing - but I am here and I will be here and I'm sorry I got so sick that I stopped posting or checking....past couple weeks just awful - but I will call GI and hope it is something fixable.  I know you are right not to think the worst....and I'm trying very hard not to.  And, if it is...well, I'll be just another member of the human race to continue on to the other side. No one escapes the exit - so I try to remember that when I get this scared.  I try to be dignified about it to my family - they don't even know I am going through any of this.  I don't tell them.  Why worry them? Thinking of you and wishing I could wave a wand of good health over your head.

 

 

 

Thanks Angie,

I had a thought...as to why this is degenerating so quickly...I have been off of the anti-inflamatories for close to a month I think...could it be that they were really keeping the pain at bay? Could the stopping them be what is killing me now?

And once you stop them for a while can you go back on?

That is the only thing that I can think of that has changed over such a short period of time.

I also think that I have another hernia of other problem (could just be serious inflamation at the site where the pouch was reattached) because I have a serious radiating pain from exactly there across to the right hip and down...maybe the staples or clips or whatever he used to reattach the pouch are causing the pain...I can trace it when I try to stand up or bend...I just have to take the CT to the surgeon for him to look at it and tell me...More doctors...

I always hoped to one day be the old lady who had a face lift, butt lift, lipo and boob job and not be the old lady with the new hip, new knee, new shoulder...

Sharon

Just saw this thread and am so, so sorry. I know that's lame and doesn't help anything really, but I am truly sorry for what you are going through. I really do wish there was something I could say/do which would help. Or, better yet, solve everything.

I will keep you in my prayers. And please know that you are being thought of frequently.

Gin

Sharon - Yep - me too - dreams of lots of plastic surgery and not this! Your theory  about the anti inflam. drugs sounds plausible - as do your others - as you know - it's all conjecture, but it's good you are trying to think of "what happened that is different"  - could be simple and wouldn't it be amazing if you went back on them and felt better.  Oh how I hope that is the case.  Yep, back to the doctor, etc. - me too - tomorrow will be begging for appointment.  Online looking at symptoms and of course, it is useless ....could be a zillion things causing my symptoms - I just need to take it as it comes. I hate that we are both hitting a rough spot (understatement) - but I hope that is what these are - set backs and something "they" can fix.  Rapidly.

Thanks for the compassion...I really need it right now (yes, feeling needy, full of self-pity, anger, frustrations...)

I finally gave in and took an IBprophene last night before bed (2am...just couldn't make it up the stairs!)...it helped, I am was less creaky, less in pain...so yes, it is the inflamation that is killing me.

Not sure if I can go back to taking them like before (certainly not as high doses or as often) but small doses to keep me from wanting to scream.

Seeing another chiro today, closer to home, maybe it can help...

Sharon

I'm gonna throw out one more thing (I'm so efficient -- when it's someone else and not me. I tend to freeze and panic when I need to help myself!) When your body's inflamed, one way to treat it is to take anti- inflammatory meds.  Another is to try to prevent inflammation. I was just reading an article on cardiac issues and cholesterol as they relate. It said that LDL, the bad cholesterol, actually creates inflammation in the body (the arteries.) Something to do with oxidation of cells, hence the importance of eating anti-oxidizing foods like salmon, avocado, olive oil, etc....good fats. Also to reduce inflammation, going to your chiropractor is a great idea. Maybe massage? Dark chocolate, coffee, anti-oxidant supplements. I know you were hesitant to take your meds so I'm thinking from another angle. Actually, when I read that you took them, I thought"Good for you!" and especially that you got relief. My husband's good like that. When I stare at a pill and hesitate, he says, "Go ahead, com'n, just take it. It'll be good!" I'm sure he was the life of the party when he was younger! 

Great advice - Lambiepie - your husband sounds great  Oh - to be young and fit and the life of the party  Sharon - I hope the chiro helps and the anti inflams. help and that ANYTHING helps you come through this and get better.  I do care about you - all the way over there across the sea.  I'm trying to get in to a new GI - my guy retired....ugh.  Really hoping you feel much better - lets be realistic - say 75 percent better - within a short period of time.  I always feel if I ask "too much" of the fates, I won't get it.  Low expectations are excellent coping skill for me.  Then, if they fix it, it is a glorious surprise.  Hang in there...and if you do, I will too!

I love the 'low expectations' coping skill...I use negotiations with God...If I give up doing this and this then can I get to keep doing that? So far, no go...

Lambie, thanks, yes, I am trying all of the natural antinflamatories from cucuma to ginger and kilos of coffee and dark chocolate...I stopped the fish oil (but eat fish 5xs week) and do mostly all natural foods with 0 chemicals.

The chiropractor is the European school so sessions are 10$ but it takes 1.5hrs the 1st time to get your history (mine is particularly long )

So the head professor came in and did all of the work on me....a very specific type of massage using heavy pressure but not pounding, using her whole forearm and weight on my back...it felt very good but do not know if it will be 'enough', no cracking ...I walked home and slept for 2hrs.

My problem is that I had cut all starches out of my diet and now I am eating whole grain bread again and wondering if it is not aggravating the inflamation.

The psoriasis (or whatever it is) may be caused by that too.

Can't seem to cut it out for more than 2 days at a time.

Took Ibprophene again this PM...it does help more than pain killers.

Thanks for the support

Sharon

 

Keep it up - glad the NSAIDs are helping.   The skin issues have happened for me, too as I age.  Who knows why? All the meds....?  Just old skin?  I am so thankful for one day when I don't itch or have a shingles outbreak...

I am hoping the pain subsides, the chiro keeps working on you, and you are able to recover - and perhaps just go a 3/4 speed -which for you would be good...1/2 better - but that may not be in your character as you are such a go getter. 

I have gone from being a go getter to a slow getter  I am still trying to get in to a new GI...endless waiting...accepting that since this is not at this stage an emergency, that's how it will be.  My nausea has lifted some - thank God.  If it had continued at that level, I think I would have just gone to the ER and faced the financial consequences of that choice....but it has lessened. 

Keep me posted on how it's going and know I am really hoping for an upswing - just remember - lower your expectations - this it turns out is not "giving up" or anything - quite the opposite - it means being realistic and then as I said, when things swing up some, it's just so great.  It is really a necessary coping skill for aging/chronic illness....sort of Zen and Buddhist really.  Acceptance of what is.  Does not mean you don't try to change things you don't like, get well, feel better....means you don't expect your life/the world/work/etc.etc. to conform to some idea of what it is "supposed to" be like. You are a smart, educated person - you probably already know all this - but I did too - putting into ACTION in my own life took me at least 7 years of unlearning old patterns and becoming almost a completely different person.  This worked for me - it may not be they way for you - just an idea.  I am happier and more free feeling when I am not miserably sick...I do more of what I want and less of what I think I "should" be doing.  The endless should can drive anyone in this culture mad.

 

 

 

 Sharon – – sorry I haven't written sooner, but indeed I've been thinking about you and sending healing thoughts.  I don't have the ability to wave a magic wand, try as I might.  

 I'm going to the acupuncturist tomorrow in hopes she can ease some of the muscular pain and even the inflammation. In the past she's written scripts for some very nasty smelling and tasting Chinese herbs. I can't say they ever help me allthough other people swear by them. You might give it a try.

I find that my  inflation pain adds to the tightness,  which in turn increases pain. If I weren't in a brace and very  restricted in not moving my shoulder for the next 2 to 4 weeks I would consider doing some sort of dance movements, say a class at the sports club.  Thai Chi would be great, if you have access to a class or instructor.

what's happening with the kink in your valve? Any news on the valve enhancer you were having designed?

Keep up what good spirits  you have and I know you will deal with all the problems that you are facing. Janet

Thanks Janet,

I went to work and came home on foot tonight (hubby was busy) so I did a lot of walking...more than in a long time...I think that it is thanks to the Nsaids (only ibprophene...no naproxene...scared that it will kill my gut again)...Maybe the massage helped yesterday...don't know, I am going back tomorrow.

I took the (soft) brace off of the ankle so I am slowly re-educating it...the rest still hurts like the dickens...I would love to take any kind of class...dance, swimming...but I am now officially terrfied of doing anything...it seems like the slightest effort causes so much pain.

I did the Chinese herbs years ago...Would go 2xs/yr to a Chinese doctor who took my pulses at different spots and then prescribed an assortment of (very scary) herbs and stuff (afraid to mention what some of that stuff looked like but I am sure that there was eye of newt and bat's wings)...I would then cook it down with about 1/2gallon of water and fumagate the house later.

Drank it for a week until I gagged. Did it help? Don't know but I believed at the time.

Keeping my fingers crossed that things will improve...can't take much more of the pain...

Sharon

 

Sharon,

It feels pretty weird to be trying to write encouraging words to you of a people. I don't post very often, but I read a lot of what is posted here and a lot of the wisdom is posted by YOU :-) So I'm thinking though I don't know if I have much to offer, at least I should try, you certainly deserve it!

I think I understand what you are feeling. I spend an inordinate amount of time in or near a bathroom and am in constant pain. I battle with depression from not being able to work and do the things I feel I should with my teenage sons, husband, and family. I take narcotics for my abdominal pain, celebrex as an anti inflammatory for terrible joint pain, Humira and Methotrexate for psoriasis, arthritis and cuffitis. Add to that I am 45, feeling like my life is over and now also officially going through early menopause and don't know what's what anymore. I am pretty #$%^&* depressed.

Which leaves me, short of medical options, trying to figure out what I have to write to you, the superwoman who is always encouraging and informing so many others. It is obvious that you live to help others and that you will live every day you are given. No one know why God gives some people easier or harder days than others -- we only know that the stronger people braved harder days. Some days it may mean all you do is breathe... you still did it. And you will keep doing it because you know an opportunity for joy will come and you don't want to miss it!

The only other thing I can think of to write, that I hope will make you feel better, is how important you are to this community and how grateful we are for your contributions! God bless you and God bless anyone who can be apart of making some part of your day tomorrow better than it was today. If I could, I would stop by tomorrow with your favorite flower or a hug or something else you really need... so I'll just put it out there and someone nearer to you will hear my wish and make it happen :-)

Jen

Hello Sharon,

I think I may have contacted you when I was considering K Pouch or BCIR surgery in 2014.  I had a BCIR in Dec. 2014 and it's been a long road to recovery.  I'm very anti med, but there came a point when I took the high powered pain meds.  So glad I did!!  It made a HUGE difference in how I feel without bogging me down.  I'm not 100% and probably never will be.  I've had a lot of days filled with depression and even sought counseling.  Logical advice for me - since I haven't been able to work I have a lot of time to let my thoughts wander. So I try very hard now (since thoughts are a choice and I can change them on a dime! lol) to steer my thoughts away from really dismal thoughts.  For me - I'm only 52 and is this it??  Tough to fight it but I hope I just need to adjust to my newest and most recent limitations.  I hope you find pain relief.  My best piece of advice - my sister is 70, has a very painful knee, and she swears by water aerobics.  Her church has an activity center and that's where she goes at least 3 times a week.  Perhaps this could work for you?  I'm thinking of you and was surprised to see  your face on this site.  I haven't checked sites in a while and I hate to see you are suffering.  You have been so helpful to me and others.  I'm glad I had my BCIR. Thank you for sharing your experiences.  It means so much to me, you'll never know.

Thank you girls, (are we still girls at our ages?)

Things are a bit better today. I saw the chiro again and they are using a new technique + the nsaids seem to be getting the upper hand on this flare. I can turn my head to the right, turn over in bed and tie my shoe laces (small victories yet huge improvement)...I can also breath without pain. 

Last week I was at the end of the rope, ready to cash in. Incapable of imagining a day when I could stand up without pain or move in bed without screaming. Today I walked round trip to the chiro (about 1mile each way up and down a bridge) ...unthinkable 5 days ago.

so, I am relearning the meaning of hope...hope means not giving up when things are at their blackest...and asking for help when needed.

Thanks for the help

Sharon

 Sharon-- Great if you're getting some relief from the NSAIDs and the chiropractor.   You deserve it.  Especially good that you can get in some walking as it helps clear the head versus being stuffed inside.

 Was treated by the acupuncturist today for pain associated with my shoulder replacement as well as some other body parts  that scream at me. So far so good, but how long it will last is another question.   Maybe  just a break in the pain cycle is what I need  until I can get the brace off and start moving my shoulder.    Fortunately she didn't even suggest the smelly herbs. I concur cooking them up is really dreadful and it's best to find a pharmacy that will do it for you. 

Previously I suggested some sort of dance or movement  class or Thai Chi.  That might not be for you, and I can understand that. Another suggestion is ying yoga, where you hold positions for 3 to 5 minutes. All poses are done  lying down on the mat and are very passive. I always feel  energized after the classes  and my body was almost pain-free.

 Sending you lots of cyber hugs and healing WhiteLight. Peace,  Janet 

 

 

 

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