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

Original Post

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.

I wish I had a magic pill for you, Sharon. At the very least, I hope the appointment with your specialist is helpful. As for that person's snotty remark in IKEA, we all are in a position of need at some point in our lives; he will be, too. It all goes around. xo

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 - this just made my day!!  Yes, when you feel so bad ...it does feel like - time to cash it in - it just does.  I get that.  I am so, so happy your are getting some relief.  I just can't tell you how happy this makes me for you....sending love across the pond.....Angie

 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 

 

 

 

To all who have typed on this thread - which revolves around our dear friend Sharon - thank you.  I feel like we are quite a group of warriors! Love the peace and white light thought.  Sending that out to you all- you all have helped me so much.  Gratitude abounds from my heart to all of you. Angie

Jen Jen - I meant to reply to you - I had ovaries/uterus gone at 45 - early menopause was not so pleasant and I thought I was losing my mind - truly - well, it's 7 years later and I'm on the other side - still here.  It's a "new normal" for me as for most women - some seem to sail through it.  I did not...and I think maybe the hardest part for me was not only the crazy I felt...but a years went on, losing my looks - my hair got so thin, my skin sort of went to shit - all over my body, and weight gain happens in places I never had to worry about - feel like a dumpy old lady at 53 and in the "media" you see 53 as "young" - also, my mother was one of those people who stayed young looking even after menopause - great thick hair, body stayed good, etc. - I just wish I'd gotten some of here genes.  Oh well - we get what we get and if I am having a day without horrible pain or distress, it's now a good day.  I lowered my expectations about so many things and it's made me much more content.  We do not do aging very well in this culture....hang in there and Sharon, you too.  You all are wonderful to me.

Angie, I menopaused at around 45 too...got married the year before and poof! Gone...(sort of like the 'best before' sticker on my butt expired)

I have noticed a lot of changes since (none good)...more fragile muscles/tissues, repeat hernias, more fragile ligaments and tendons, less muscle mass, more fat (as if the rest wasn't bad enough!)...not even going to touch the wrinkles and hair etc...

It appears that our health goes down hill in a handbasket with age...my mom had serious fibromyalgia...now I am wondering if she didn't have Ehler's-Danlos too. (some similar symptoms like severe fatigue and pain everywhere)...I will find out more at the rare diseases clinic...they will do genetic testing...not sure what they can do for me once we get some answers...maybe just to learn how to control the pain without narcotics.

Not sure how we handle this crap...speaking to normal people with normal people problems almost makes me laugh...we deal with the same stuff that they do plus have to deal with all of this on top of it...they cry, complain (fine, they are allowed but still...) but haven't the foggies idea what life is like when on top of the normal stuff you have all of this pain to deal with...And it never, ever goes away...

This morning I woke up with my 10yr old G-daughter beside me...made pancakes for her...best job in the world being a G-mother! (especially since I never got to be a mother)...some days it is worth staying alive.

Sharon

 

 

I will turn 53 years old in a few weeks and have had myriad health issues the past year......Thyroid cancer and resulting surgery, pinched nerve in my neck requiring physical therapy (likely from degenerated, bulging cervical disc), increasing blood pressure which for many years was consistently 120/80 but is now 130/110, worsening eyesight to the point I now cannot read much of anything without my glasses, all of this on top of the chronic IBD/chronic sleep issues I have always had and for which I take a plethora of medications.  It is disheartening, but I realize that the aging process eventually takes its toll on all of us.  I try to look for silver linings- one is that I can still perform sexually although not as well as I once did or would like to. Another silver lining is that I still look pretty good for my age, and another is that I still can do my job as well as ever despite all of these issues, and I feel like I am productive in what I do, which is important.

However, I do get the same feelings of despondency especially when thinking about the future and my parents etc. but I fight off those thoughts and try to enjoy life as much as I can while I can.  Generally I am successful in fighting these mental issues with physical activity, but I can understand how, if physical activity becomes restricted and one has more time on their hands, it gets that much harder. Counseling/support groups with others with like issues helps.  Good luck.

 

CT,

Us girls tend to forget that you boys also go through your own 'andropause' and that you age too (albeit slower and much more gracefully...;( )

Enjoy what you can while you can...that is all that we have got left.

Sharon

 

I think I have aged gracefully on the exterior, but not on the interior........stated differently I feel older than I look, but what that means is that if I can fake feeling young, I can get away with appearing like a quasi-youthful man.  And in my business, this is something I actually have to do, because it is not an old man's game.  I am grateful that I have the necessary energy to pull this off as well as pull off the productivity (billable hours) necessary to sustain myself in my profession, but there are days when I come home and feel beaten down.  But I don't feel defeated, but rather like I am just surviving.

I have a huge blood test looming on Friday- testing me on two different and distinctive health issues being treated by separate doctors who have issued separate orders: (1) thyroglobulin test to see if there are any remaining thyroid cells in my body (surveillance 6 months after remaining thyroid cells were irradiated with radioactive iodine in the aftermath of thyroid cancer surgery); (2) liver chemistries due to taking Methotrexate/Remicade for J Pouch inflammation/ileal inflammation above J Pouch.

 

 

 

Last edited by CTBarrister

It saddens me to hear everybody's health problems as none of them have been easy or merely temporary events.   I agree that it can be difficult to carry on a conversation with somebody who is complaining about having had a cold or flu. Just so I don't speak out  of order, which I will regret later on, I offhandedly suggest that they will only be getting better, while other people have yet to get their cold and get sick. Yep it's frustrating having autoimmune diseases.   It is good we have this forum  to support each other in a knowing,  caring manner.

So I'm going to play my age card. I'm 68th and last fall converted from the J pouch to the k pouch,  which was quite an extensive surgery--at my age. Four weeks ago I had a  failed replaced shoulder replaced with a reverse shoulder. During the surgery my humerus  fractured. I've been in a brace 24/7 ever since, except to dress myself and manage the K pouch evacuation, which is about four times daily. Lots of pain and inconvenience, but in time this will pass  so really I have few complaints. My biggest upset is that I can no longer downhill ski or horseback ride. I also have both hips replaced, need my other shoulder replaced and have serious scoliosis and stenosis of the spine.   That's not all, but I've gone on too long…... And don't mean to complain  as it is all manageable and not autoimmune or cancer. I just thought that I could rant and rave on a day when I'm having exceptional pain.  Thanks for listening.  Best of health to all of you, as you all deserve it. Janet

Janet,

Today for Easter I went to a coworker's house for dinner and her mother, who is in her late 60s or possibly early 70s, is 3 weeks out from hip replacement surgery.  She explained to me that they used titanium and they no longer cut through muscles, but rather push them aside.  She was also a very active woman in her younger days, at one point playing in a hockey league (I think back in the 1970s, a time when women's hockey was practically unheard of, except in places like Philadelphia, where she lived). She was telling me about her rehab and how she has good and bad days. She is an overweight woman, and I can't imagine any extra weight would help with something new in one of the lower extremities.

My mother, who is 81, had a knee replacement but she struggles mightily with osteoarthritis which have wracked her lower extremities, so that making it up staircases, getting in and out of cars, etc.  is a laborious chore for her.  My mother is sharp as a whip mentally, and it bothers her tremendously that she cannot walk around like she once did.  At times I can observe the anger and frustration in her face, especially when we go out to eat.  However, having visited my parents last week in Florida for 6 days, I concluded she is dealing with it mentally better than she did immediately after her knee replacement surgery in 2007, or at any time since then.  I think my mother had the attitude that the surgery was going to enable her to go out and kick soccer penalty kicks, but that is not what happened.  My parents both seem very happy with their life in retirement in Florida, and they have aged well apart from the issues my mother has.  I do not have a great deal of confidence that I will be able to age as well or live as long as they have- but I am okay with that.

Last edited by CTBarrister

Janet,

I didn't realize that you were 68! Wow...I am impressed. You still do so much and have such courage.  At this point you have become my new hero...remaining positive and opitmistic inspite of everything that is going on. You are giving me back a little hope.

I am still angry at my body for not behaving itself and acting out when it should be enjoying these last years of  'youth' before hitting the next stage of life.

I cannot even envision 60 let alone 68.

Ct,

Our chances of growing old gracefully like our parents did (not mine but...) seem to be rather thin...they did not suffer from all of the diseases and surgeries that we have thus their bodies went into old age with a better 'base health'...I am certainly not looking forward to retirement at 67...80 or 90 and still traveling or running around doing the shopping? I wish!

I take my miracles where I can get them...sleeping through the night, being able to work or climb the subway stairs without a cane...small miracles but huge mercies...

Good luck with your test results...hope that everything comes out clean

Sharon

Can relate to all of you above - every single story.  I do not are for getting old and all the health issues - but, when we were born into our bodies- we got what we got.  I take some comfort in knowing that everyone eventually faces this if they live long enough.  When I'm not in awful pain or nausea or something, it really is a gift.  For me, that means painting- I paint like someone possessed  I know everyone handles this differently -I am extremely introverted, and I love a day with no plans and my paints...and no pain or nausea...that's how I know I'm not depressed - because I still get pleasure from something.  Boy - there were years when I got pleasure in nothing.  So, I take not being clinically depressed as a gift and not in huge pain as a gift...in other word - entirely changed my expectations as to what a "good" day is as I've aged.  I do feel about 10 or so years older than I am - that's got to be all the health stuff - when you've dealt with health issues since you were a kid...well, it takes it out of ya - who wouldn't have a harder time...I think you all are wonderful and I think we are probably way too hard on ourselves regarding so many things.  I feel like I have a little online family of folks who get it - and that has been priceless to me. I can't get into new GI until April 18 - long wait when I am really worried.  Well, is what it is.  If I feel bad enough I'll go to ER.  I was freaking out that I have cancer - did this for 2 days - then, thought, "well, if I do - I'll just join the ranks" - and so forth - have to flip my thinking a lot to cope with all this - I imagine that is part of aging without going insane!  Thanks to you all for the support, stories, and sharing - it has been beyond helpful to me.

 2 Thoughts at the moment...they showed "Forest Gump" for Easter here...that movie is so full of pure wisedom and joy...my favorite quote when his mom is dying he asks her why, and she says, 'its just my time'...taking what life has to offer with serinity and gratitue. The other quote from the same scene is 'Maman, what is my destiny' and the answer was 'you will have to find that out for yourself'. I guess we all have a destiny and a time to live and die (and be sick)...

2nd thought...seeing the speicalist for rare disease tomorrow...here we go...getting on another merry-go-round.

Sharon

 Sharon – – I hope all goes well with the specialist, or at least as good as can be expected given your situation. Would like to say I'll be thinking of you, but you'll be at the doctor and I'll be sleeping.  When you get a chance and are up to it, please write with the results and next steps. I'm there in spirit,  helping you through the appointment and absorbing the information. Be well, Janet

Sharon, good luck with your appointment. I think that the best way to achieve inner peace is acceptance, and the path to that is answers. For me, knowing I had an incurable (but manageable) disease (enteropathic arthritis) was very liberating. I could forget about "cures" and focus on the best function that was within my grasp.

I just got back from a trip to Zion National Park. I took daily long hikes, and I am even between biologic treatment (off 6 weeks now). Sure, no gut-busting strenuous hikes or rock climbing, but I got my steps in and saw some awe inspiring vistas. Yep, I had to take extra pain meds and I was miserable sitting on a packed plane. But, overall, I enjoyed the time.

Jan

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Last edited by Jan Dollar

 Jan – – I totally agree with you.  With each new medical obstacle I face I am  more accepting  once  given the correct diagnosis, and I am able to better manage it once I learn more about the disease and my limitations.  Then I move forward  and do my best to exceed the limitations. 

 Your hiking adventures look fantastic. Good for you! Janet 

Been a rough holiday long weekend. My female problems are conspiring with my GI problems to try and take me out...not letting them win has been a full-time job. Reading these posts has been a lovely occasional diversion :-) Love the photo from Zion, Jan!

Glad to hear Sharon, that you are getting some additional help -- both from the specialists and the granddaughter! I never had a mother then got to be a step-mom and a mom. Now I am also blessed to be g-mom to the s-daughters 6 kids. So glad you have that in your life! It's reason enough for "being," even on my worst day!

Thanks to you and Angie for chiming in on my menopausal timing concern -- kinda good to know it not that unusual -- and it sucks but its not that bad :-/ I mean, compared to the rest of this b.s. anyway. It's just a lot all at once.

I got stupid angry at the T.V. the other night watching some lame commercial with all these beautiful, healthy elderly people running, swimming, etc, insinuating how great they were for looking and feeling so young at their age -- and that it is within everyone's reach to be like them if only we all do "this" or "that." Totally. Stupid. Angry.

I'm thankful for all of you -- for all of you playing this game as well as you have for as long as you have -- you are my inspiration! And I am super impressed at what you are fighting through at 68 Janet! You all help put a lot of my concerns into perspective!

Barrister, I wish I had your job -- really wish, seriously, your job. I hate not working but I am not too stupid to understand how unbelievably hard it must be to keep up with this  gorilla of a disease (and all it's trappings) weighing on you everyday, so I am also humbled at your accomplishments. Wishing you all the best results on Friday!

JenJen

Jan,

Did you see any mountain lions in Zion? I went hiking with my sister in Rocky Mountain National Park in Colorado some years ago and a mountain lion had attacked a 12 year old kid a week earlier in that park, but the father of the kid somehow fought the mountain lion off with a switchblade knife.  They told us at the Ranger station to pretend we were tall and stick our arms and hands straight up in the air because a mountain lion is intimidated by height and the taller you look, the more scared they are.

Jenjen,

It's actually a surprise to myself that I have lasted in this business for 24 years.  I feel fortunate to not only have a job but to enjoy what I do and feel somewhat productive at it.  If I didn't have that or couldn't do my job due to health issues, I would probably be more miserable than anyone posting here.  I feel like I am helping people and I draw satisfaction out of it, especially the solving of problems that seem unsolvable. A few months ago, in a case that I was certain was headed for trial, I came up with a creative way to settle the case that in the final analysis made everyone happy, most importantly my client, who was very nervous about the possibility of a trial.  When stuff like that happens, you feel a level of professional satisfaction that is rewarding.

I am just fortunate that I have been able to treat my issues- the cancer was caught early, apparently, and the IBD has over 43 years responded to various treatments we have thrown at it.  I have been consistently lucky with my doctors and treatment and can offer no explanation for it.  I have a friend who is very spiritual and she tells me "it's all for a reason." I am not sure if it is that or pure unfettered good luck, but whatever the case it has enabled me to get through it.  In my own eyes my problems are minor compared to what I have read of others on this board, although if you looked at my scope pics from various times in the past few years, you would figure I am in much worse shape than I actually am.  I also wonder if after 43 years my body has not somehow adapted to the diseases I have had that enables me to function.  The biggest physical issue I have at the moment is the pinched nerve in my neck, which is annoying, but it's not like it's ruining my life or anything.  

Anyway, I hope you can push through it and get something you find satisfying.  I speak to so many people who hate their jobs, and I feel very fortunate with mine.

Last edited by CTBarrister

No mountain lions in Zion, CT. But we saw several grizzly bears when we were in Banff and Jasper National Parks last year. We have mountain lions in our local hills, but they keep to themselves.

Jan

Jan-

Mountain lions are typically nocturnal creatures I think, except when they are wounded or sick or hungry.  They did have posted warnings about them at Rocky Mountain National Park after that attack, and that area might be a more mountainous and suitable environment for them than Zion.

I had a friend who was hiking in Banff and she "stumbled" onto a grizzly bear which she and her hiking companion didn't see at all, until they got alarmingly close to it (like less than 50 feet away), as it somehow blended in with its surroundings.  Fortunately the bear was preoccupied, eating some berries with its back to them, and didn't see them.  The vast majority of people who get attacked by grizzly bears inadvertantly get between them and their cubs and the sows go into attack defensive mode automatically if that happens. My friend who "stumbled" onto that berry-eating bear was very luck she was not between it and the cubs, and that it didn't see her and her friend.  They slowly backed away and were in awesome, heart beating fear of this large and powerful animal.

I am glad to hear you felt up for that Zion trip- I would like to go there some day as well.

 

 

Last edited by CTBarrister

CT

good luck on your blood test tomorrow.  And don't encounter any bears or mountain lion's on the way.  Janet

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