Finding it hard to stay optimistic

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

Glad you are doing better...

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.

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.

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

 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.

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.

CT

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

Thanks Janet!! Yes I have two big ticket items on that blood test, and I am going tomorrow around lunchtime for the test.  I should have results back by early next week, although the thyroglobulin test I may have emailed to me through the Yale New Haven Health Network.  All the results of my TSH tests (which have to be monitored and suppressed during thyroid cancer treatment) have to come to me by email and usually early the next day and I know my results before the doctor does.  My last two TSH tests were 0.19 in December and 0.21 in March which is low and as my endocrinologist wants.  Tomorrow's test is to see if thyroglubin is being produced by any thyroid cells left in my body.  He said the optimal result is 0 meaning no thyroid cells and no thyroglobulin.  He said if the number is over 10 something is going on (i.e. a metastasis not killed by radioactive iodine).  So this is a big test in my cancer treatment as it takes 6 months or so for the radiation to work and I am now more than 6 months past radioactive iodine which was given to me September 16, 2015.

Hi Guys,

Jan, Wow! The picture looks fantanstic! Yes, I agree that we cannot stop living just because we are sick and that we have to push forward (I will not say push through the pain or there wil be a collective 'arghhh' from many on this forum). It looks fantastic and that is one of the places that hubby and I would love to visit if he could just stop breaking legs

Jenjen,

So sorry about your Easter weekend...it sucks to be down and out on the Holidays...Yes, the ladies troubles seem to double what we have to deal with and the guys just don't get it...even the male doctors...they do not understand that it changes everything in our bodies including how they react of exercise, food and how we sleep...ditto on the commercials...a big arghhh on those...We get the same ones here but our include 35yr old fashion models with fake grey hair...So that we can feel even worse about ourselves when they tell us how they are making the most of their old age! I am thrilled that I can still work no matter how hard it is...I need the work to keep my brain functionning...

My G-daughter is asleep on the sofa...teacher's strike today...I love having her... I taught her basic biology and the body's systems yesterday (she will be a doctor...!) I made pancakes at midnight for them for this morning...cannot be tired when she is here!

CT...yup! 100%

So....the rare diseases Doc...

My left iliac artery is dialated dangerously. From the CT scan we can see a narrowing then widening then narrow again...(slices are like bread slices across the body)...not sure if it is from birth, recent, due to inflamation or all of the surgeries...will have a arteriogram done very soon....he says that it requires either vigilance, meds or immediate attention...to avoid arterial disection...never a dull moment.

He did my full medical and family history....2hrs. Nearly fell off of his chair...am being reffered to yet another specialist for the Ehler's-Danlos, wants genetic testing done again too...he only does arteries...says that I do not have the arterial type of ED but that the arteries are very fragile and need constant surveilance...and the beat goes on....

...As for the pain, the flare is better. I walked a lot yesterday, the heels (2.5inches) help the Achilles tendonitis and hip but not the knees...can win for losing  

In spite of it all I am planning a family vacation and my trip home...not looking forward to the plane trip (8+hrs) but that is the price that you pay for fun.

Sharon

When I talked about answers, I was not referring to something new that was not particularly on your radar! A dissecting aneurysm is the last thing you need, literally. I hope the angiogram has better news. 

But, getting better clarity on your Elher's-Danlos would be great, eh?

I'm really glad you can enjoy being a grandma!

Jan

Well, I got some good news in record time, at least on the thyroid aspect of my blood test.  I went for the blood test 11:30 am this morning (EST) and I just got an email minutes ago (10:33 p.m. EST) from my endocrinologist via the Yale Health Network.  The subject line of his email was "thyroid levels excellent."

My TSH is 0.08 and my thyroglobulin level is 0, which is perfect.  He told me to recheck the TSH in 3 months.

So it took a little over 11 hours for the thyroid portion of the results of the blood test to come back.  The liver chemistries monitoring from taking Methotrexate will probably not be back until next week.

Fantastic news! Congratulations!!!

Keep up the good work...

Great CT!!  Here's to some good liver news too.  I am really happy you heard some good news and I know that sigh of relief feels so good!  Keep us posted - we care about you out here in j pouch cyberspace!!  So happy to hear someone's good news!

I am taking the fact that I cannot get an appt to see the specialist as a good sign that the aneurysm is not in any danger of exploding this week...if not they would have hospitalized me immediately...I hope.

But my mind is playing all sorts of 'what-if' games with me lately...I have been caught chronically smiling, not getting upset and floating on a cloud above the earth while the rest of the human race is worried that the light isn't changing fast enough...means that I am scared to death until proved otherwise that this is nothing...and taking each minute as a gift...(also having a couple of morbidly awful thoughts about what if it disects in the middle of...)

Life shall continue

Sharon

Sharon,

Hang in there as you always do.  Like Jan's tagline this too with pass.  However, for us it keeps passing and passing and passing and passing.  As you know you are not alone and your posts have been an inspiration to those of us that don't post or post view little.  

Thank you for alway sharing Sharon I hope you are doing better today.

Thank you gutless,

I fight off the fear by organizing dinner parties...had 6 for dinner...gets me out of my head and out of my fear.

Don't think about anything while I cook...and eat less with guests at the table...double benefit...our enemies are isolation, loneliness, fear, abandonment...I invited some neighbours over to celebrate a friend's last chemo treatment...I figured that that was as good as any reason to celebrate...and it puts things into perspective!

Will call tomorrow and beg for an appt...

And the beat goes on...

Sharon

Sharon – – it's fantastic that the doctors discovered the heart condition before it developed into an emergency situation,  before it developed into an emergency situation, although  I am so sorry that you have yet another serious health problem. It simply isn't fair.   As always I am in great admiration of you, considering your ability to help everybody else  and even throw a dinner party for six people. Excellent karma for you!

One of my sisters was recently diagnosed with a heart condition  Although she is not one to sit around the house and mope, she apparently slowed down enough  or protected her heart in someway that she developed pneumonia.  when I had broken six ribs--and punctured a lung – – I was required to cough, despite the excruciating pain. The point was to move about  and out all the gunk  that accumulates in the bottom of ones lungs.   It is similar to having one blow on that toy looking object in the hospital. So my message is  make sure to cough or in some manner keep your lungs clear.

 I hope you can get in for an appointment ASAP. Waiting around is too stressful, which is bad for ones health.  stay strong and I am sending healing thoughts.  Janet 

Sharon - thinking of you - it is scary - and I do what you do - sort of sway back and forth between "worst case" and "best case" and also the "I'm exiting the planet" - we've all gotta do it eventually - etc. etc. - I think as we age and yet another diagnosis happens, it's probably natural.  One friend used to call it "a sense of impending doom" - it's different from existential anxiety!

I hope the heart condition is something easily managed (obviously) - I think my fears go to all that too - as in, "now what awful medical procedure/surgery do I have to endure - how much of this can I take?" etc. etc. - it's only human and natural to not want to deal with illness.  We'd be crazy to say otherwise.  Obviously - we learn about compassion, human frailty, and all kinds of growth happens out of long term illness, etc. - but I would love to just skip it - I'd like to go back to the part where I am blissfully unaware of physical/mentally suffering - age 4 or so? Trying to laugh here.  Also, youth was fun as you had so much time to "get past" whatever the health issue was and move on - lots of "future" out there - and then...you blink - and here you are.  I try very hard to stay in the present, to do things I enjoy doing (for you - the dinner party was excellent - zen of cooking is a great one - wish I liked to cook!) - be thankful if I am not in severe pain, and just take things as they come.  What else can ya do?  I truly feel you are a wonderful example for us because you are so honest about issues you are dealing with and you don't sugar coat it - you can say, "I'm scared" and then you fight on.  It's refreshing in a world where we must put on our happy face all the time to come to this forum and say what lies beneath....

Hope your heart is not a huge issue - we need your wonderful heart out here.  Whenever I read a post from you, it lifts me up - (not bad news) - but just your voice..as it were - well, I think you inspire many people on this forum.  I see it over and over in the responses to you.  I admire you so much. Thank you for sharing and I am hoping for good news for you when you get to specialist. As Jan says, "this too shall pass" is always true - she helps me a lot too. Thanks to you all!  I am so nervous about an appt. coming up - I know something is "off" and I know I just have to wait it out, go thru the tests, and then cope.  Just like everyone else on these threads - we are not alone.  I thank God for you people.

Thanks Angie,

You are great...And couragous.

I really feel pschizoide here...no way to know what the next minute will bring...you seem to understand so well...all of us have been through our lot of roller-coaster health and live on the edge of fear/joy/depression.

At the risk of repeating myself, this is not a disease of wimps!

Sharon - years of living with it - and yep - I know what you mean about feeling like a nutcase.  I still think you handle it better than me - I tend to stay in and paint, read, and knit - you are hosting dinner parties!  So, you inspire me...that said, I don't like to cook - you inspire me because I just feel you understand. 

I cherish good days - days with relatively low nausea/pain.  I hope you are still working only part time.  There is nothing for you to be ashamed of regarding not working so much.  I know you love your work - but your health has to come first right now - (stating the obvious, I know).  You are a go getter - and I know that sustains you.  Just "go get" a bit more slowly  I need to speed up - maybe we can morph into one person who handles this "just right" ha! Sending loving thoughts to you across the pond.

Thanks Angie, 

Next week I have a diabolical schedule...5 full days and working til 9pm each evening...I may just try crawling to work for a change...not sure how I am going to handle it but my go-to system is Do Not Eat solid food all week.

Soup. Yoghurt and bananas. That is my survival mode. It works fine and helps me not to have to intubate too much at work (some places are not k pouch friendly) and reduces urgency sufficiently to be managable...

If I do not eat any sugar in the daytime then I have high energy...if I eat even 1 candy I fall off of the horse and crash and burn. Tricks of the trade.

No news from the specialist yet...Will march on until someone yells...Stop!

Off I go again...

Sharon

I don't write often at all its to hard to talk to anyone even husband. They will never understand as how can they really. I go to my psychiatrist every two weeks now for about 8 months now. She is so important to me. Its my safe place and I can tell her anything and everything. She had now patience with this problem but did her research and is so great. I cant wait to see her every two weeks. Never had anything like this before.

Trying to deal with the guilt of going down to one income and feeling worthless has been a huge thing for me to deal with. Have been on Belladonna/opium for about 4 years now. Because of ins crap (Sorry) Medicare does not cover it so my doctor switched me to valium suppositories and Imodium and I have really given a good try but since Jan. I leak all the time and the spasms are back have bad accidents at night and its bad again. Saw my doctor explained about the valium being covered but not working and my therapist told me that to call and have the doctor ask for a think its called an exception to cover the medicine since nothing else has helped. Talked to him medical receptionist and gave her the number and she said she would take care of it. You are supposed to know within 72 hours at the longest. So two weeks went by and I called her and she had not done it yet. She said she would do it and give me a call, heard nothing so I called Medicare and they said I was denied and felt like my world was over. Sat at  park alone and just cried and cried. Called my therapist and she was fuming mad and said she was going to write a letter from her view point seeing me every two weeks. The women at Medicare told me to write a letter myself going into every detail. Wrote doctor at Cleveland clinic avoiding cc his medical secretary since I can not stand. I would dread every month calling and asking for another prescription since they had to send me a paper one every month and I would get it filled. Many times I had to call 2 or three times and she just not care. The doctor thinks she walks on water so I don't dare say anything about her to him. I felt like a hostage with her every month. I called her while at park and was still crying and told her and got nothing from her. I got a e mailed from just her to days later saying exactly this with no caps or period.

hi we will write a letter and send it to via e mail

That was 4-05 and I have heard nothing. I have my letter and I see my therapist this Thursday and she has hers.

I am at a loss in my life and am so ready to give up. I take care of my mom for the last 5 years since my dad passed. Thank god she only live a few houses down but its very stress full. I need some joy and peace and go to yoga read  books but I am just so tired of fighting for everything.

 Feel so bad reading what so many of you are going through and send you good thoughts.

Lost my life directions and don't seem to care anymore.

Please forgive me so whining like this.

Frances

Frances, first, please do not apologize for feeling the way you do or for venting. This is why we are here. We may not be able to solve your problems, but at the very least we can empathize.

Second, I am unsure how to handle your CC doctor's medical secretary. It sounds like you have already complained to the doctor. In regard to the letter, I think you need to give him a couple of weeks to get it done. Don't expect some hugely detailed thing. Essentially, he just needs to certify that you have tried all covered options, and you now should be offered coverage for the medication that works. 

I am so glad you have a therapist on your side. I wonder if she could refer you to a patient advocate to help you with the Medicare struggles? That is if that social service exists in your area...

Jan

Thanks for much for you kind words Jan. I am working on apologizing all the time and saying I am sorry when it comes to my illness. The guilt of negatively effecting our whole life is very hard for me to handle some times.

It really show how your life can drastically change and sometimes its out of your control. That's the hardest thing excepting I cant fix it. I am a people pleaser and love to help others but for some reason don't feel the same about myself. I have always done as much as I can to take of everyone and feel so worthless now.

There is a little saying I have attached to my vanity so I see it every day its says.

(Be there for others, but never leave yourself behind)

That's what my homework for last two weeks to stop saying im sorry when its not your fault but you just feel bad.

Thank you for the advise

Frances

Personally, I think it is OK to apologize to those around you if you feel like you are being a bother, nuisance, or whatever. People around you don't get it, and it really is disarming to be the one who is trying to do right, instead of acting entitled. It can help YOU feel better about being in need. 

But, when you are here, with close friends or family, or in your therapy sessions, it definitely is not necessary.

Jan

Hi Frances, 

I am so sorry, that it is a never ending struggle and that the people who are supposed to be on your side and helping you are not! Medical professionals have a job to do and that job is to take care of their patients in a timely fashion and not cause undue suffering...(the Hypocratic oath????!)...Whether they are doctors or nurses or assistants it is still the same job, sometimes they forget it because they are too busy being messed up in the paperwork and every day stuff...you can gently remind them.

I am a people pleaser too and feel very uncomfortable asking, even when it is my due...so I have tricks...one is candy. I make candy baskets. (God bless the Dollar Store!!!!)

I spend $10 at the dollar store, make a cute basket with all sorts of candy and put a card in it thanking the for all of their help...

Keeps me in their minds in a 'good place' and helps me to get what I want when I need it.

When my dad was hospitalized 2 yrs ago and I was dealing with the horrors of family feuds along with the medical disaster I brought in baskets for the nursing staff.

Although they did not need encouragement to take excellent care of my dad they did go the extra mile with me calling when needed and giving me the medical reports that my brother was refusing me.

I spent hours making those baskets (hubby called it my therapy) and I belive that I am the only one who ever brought them anything...also bought doughnuts, muffins etc weekly. They felt the love and I felt better just doing it.

Take her in a basket, thank her for all of her time and effort helping you and ask for nothing when you do it.

Some people just need to feel appreciated before they can get around to helping you...

By the way, I no longer appoligize for being who and what I am...I may feel guilty or sad or miserable and depressed but I am not sorry for feeling that way.

I am a caregiver and give to others constantly...so when I need a little (or a lot of) giving then take it in spades...I even demand it now...this is my return on investment...getting back a bit of the love and attention that I gave.

Remind those around you that you are not asking for anything that you have not given them 1000xs over...it is just your turn.

Yes, you would prefer to be spending your money in an amusement park or a romantic diner or on a vaction but we do not always get what we want....so do what Frances needs to feel better and darn the rest....

Sharon

So sorry Frances - I also have been where you are and it's just awful - somehow, I got past it to a better place - mainly, my totally changing my thinking about life- the guilt for not working....the staying home a lot...etc. etc- I found ways to entertain myself here - took years of relearning...when I feel terrible physically, I do sort of go off the rails...but I think of it as a "new normal" - but again, I worked on this with a therapist and it took me about 8 years to get to a place of more peace, relatively speaking.  I am fortunate in that I am an introvert - so I don't miss being out and about, in "clubs" etc. -I do a lot at home, have some friends to do things with, and find ways to find meaning in art, knitting, reading, etc. - not to say this is what will work for you - but I have been where you are when the entire thing is just crap and fighting the insurance is crap and it's so awful...and I wanted to give up...and I didn't...and life is not as bad now.  I just want you to know I totally understand.  I even checked into the "bin" (laugh - just hospital) as I was feeling suicidal -so, I really do get how you feel...and I'll be damned - in time, with tons of work, I don't feel so bad emotionally anymore - physically - well, that's an up and down thing - but when not in horrible pain or nausea, etc. - I am ok.  Please don't give up and know we care out here - you are right - people without this type of illness won't get it (they can't help it) and that was part of why I drastically reduced my social activities - too many times of cancelling - trying to explain...etc. etc. - and it just got old - if you love socializing, then this disease is really tough...if you can learn to enjoy solitude - it's not as bad.  I was very social - but not so much anymore and yes, all the "books" say, "you MUST be social" to live long, etc. etc. - well, I have come to the conclusion that the books are right - for most people - but not for all people.  Please feel better soon.  So sorry you are going thru this.

Angie its so hard for me to believe there are so many wonderful caring people like you out there. I have never met anyone that can actually say I know how you feel except here and it means so much. Its a very lonely thing and I keep most of it inside except for my therapist that I have been seeing for about 8 months now and I love her. I call it my safe place she of course did not know much about the whole J Pouch thing like a lot of doctors. But she educated her self and I look forward to seeing her every 2 weeks.

I have been shy my whole life and its been a struggle since I was young. I have lost a lot of friends due to this but I think if they were true friends they would have stuck around. When my world changed over 4 years ago I just totally isolated myself except for my family and even my boys I did not let them know a lot, I never want them to worry.

I take care of my mom for the last 6 years since my dad passed away. She only lives a couple houses down so that really helps. My sister goes over on Sundays to give me a break. She is in very poor health and is deaf and her and my sister are my best friends. But she can be a handful. My therapist has really helped me letting my mom do more for herself. I was definitely enabling her to do make me feel that I had to do everything and now she is doing more which she does not like but has been a great help for me.

I have Hashimoto now so I suffer from being so tired all the time and the medications don't help in that area. I have gained 47 pounds in the last 4 years and I hate the way I look so that is another reason I don't like to go out either.

Being denied the medicine that helped me most for 4 years and now this new ins. with not cover it has been devastating to say the least. I went to see my therapist today and I am appealing the denial and she wrote a great letter to put with mine. But of course the one that will make the biggest difference is my specialist at the Cleveland clinic. I know what happened his medical secretary filled out the appeal form without going into detail and he just signed it. I hate dealing with her and he thinks she walks on water. Sent him a short note asking him if he could right a letter for my appeal going into detail how there is nothing else that has worked and I need to on it. God one sentence that said (hi we will compose letter and send it to via e mail and that was a week ago. Who cares that I leak 95% of my day and have bad accidents during the night and that I have painful spasms and I cant walked very far at all.

I try every day to put on my happy face take care of my mom and be there for my family but so tired of my poor quality of life and fighting for something I was on and helped.

Please forgive me for going on and on but your letter touched me with your kindness to a total stranger.

I am doing more things around the house now which helps.

Thank You

Frances

Hugs, Frances. It is a shame that so many of us suffer (and others out there who suffer in silence because they are isolated by their various diseases). 

Even if others try to understand and help, it is usually rather useless. I now understand why disabled folks would rather try to do as much on their own, than have people fuss over them and draw attention to them. I feel much better when I am accepted "as-is." My husband still tries to offer a helping hand when he sees me struggle a bit getting out of a chair. He still does not get it that it hurts me more when he pulls on my arm, helping me get up. He's just trying to be a gentleman, but it feels like I am slowing everyone down and refusing help, to boot!

Now I am whining, and didn't mean to hijack the thread. Been off my Cimzia for 2 months now and the arthritis symptoms are getting worse. I really want to get going on the Remicade, but need to be patient (practice what I preach!).

Jan

Sharon......my favorite pain med is Tramadol (Ultracet).  It doesn't really get rid of my pain but it makes it tolerable and I can function almost as well as if I was in no pain, at all!  I only take it when I absolutely need it to "move".  Otherwise, I would spend my day in bed or in a sitting position.  I hope you find something which works for you.  The other med which really helps is an antidepressant.  My doc prescribed the generic for Welbutrin.  I was hoping it would give me a lift and make me energetic about doing things.  Nope!  But, I don't feel depressed when taking this med and compared to the alternative, I can't complain!

Don't give up on finding something(s) that work for you.  There are answers out there.  I'm convinced!  Finding those answers is a challenge.....especially when we feel like sh_t!

BTW........I'm still a fan of the nightly martini!  Welbutrin and all!  I just don't take it with my martini!  That's what they meant when they said, "Don't take with alcohol!"   Right?

CeCe

CeeCeeee (how many 'e's?)

I wish that I could 'martini' but I can't..I have an alergy to wine (and whine) and cannot drink most alcohols or I get a nasty reaction (goes from rashes to rushes to ER)...I have Tramadol and like you said it does not kill the main but takes it just under the line of intollerable....it helps a bit...But not enough when I am tearing my hair out in agony, rolling on the floor and wishing for a swift end to it all...(at least to all of the pain....). 

For now I have put myself back on Nsaids and that helps.

With a lot of chiropractic and a little nsaid we are getting to the root of the pain and putting my body parts back where they belong...I can feel the pain suddenly evaporate as soon as we get to one of the root blocages and unblock it! It is absolutely amazing. Some of the blockages have been there for so long that I was starting to look like a Bonzai tree, all twisted up and now I am able to stand straighter and walk with less pain....any progress is progress.

Frances...

I feel your pain. Oh, so much.

Although I was never shy like you and usually very smiley and fun this disease and all of its horrible manifestations (incontinence, cramping, lock-down in the bathroom for hours...) made me a shut in for years.

It also made me poor. No money to go out, only for meds, treatments, surgeries etc...so my social life in the most beautiful city in the world, sucked!

I couldn't go to theaters, movies or museums (their bathrooms are too few and too far away and so under-equipped for a k poucher), the metro was terrifying some days and the risk of leaking and messing myself in public has always kept me locked in whenever there was a risk. I have never driven in this city and like in the burbs so the fear was real.

I have missed out on so much.

We live in the center of Europe and I have never been to most places for the same reasons. 

Hubby, who is a social animal and used to be invited to all sorts of weekends, coctail parties and events would either go without me or not go at all...now he just refuses.

I love to entertain (thankfully) but obviously when you are sick, that is the last thing that you want...Strangers or clients watching and waiting for you to come out of the bathroom....now, it seems that my workplace has noticed my 'problem' and no longer want me in the office using their toilet...horrors or embarassment and discomfort.  I often feel like a leper.

But I soldier on...no choice...I do not want to give up or give in. I am a fighter and although I get into a funk sometimes, go all deep and quiet inside, I eventually get back to being me, albeit and slower and less agile me.

I said good-bye to my graduating students yesterday. Tears flowed all around. I have taught these kids for 3 yrs...they have seen me with a cane, pale and in pain and at my best...there were a lot of hugs...I may not be able to be me all the time but I can still give my best to others for as long as I live and breath...Giving is what makes my life bearable. I get to forget 'me' for a while and concentrate on someone else. I makes a huge difference in my life.

Do not give up but please search out alternatives...there may be some. Alternate therapies like yoga, deep tissue massage, biofeedback, pilates...you never know, maybe they can help with the leaking and the spasms...just do not give up that fight. 

Every day of sunshine proves to me that there is a miracle hiding behind each cloud (no, I am not on anything!)...I take my miracles where and when I can get them.

Sharon

Jan, 

I know that you hate it but let the man be a gentleman and pretend that it is out of love and adoration that he is giving you a hand....it may not help you, but it may help him feel less useless in the face of your pain. 

Sometimes they need to feel like they can help the ones that they love...Even if it is only to get off of the sofa!

Sharon

Sharon, I am happy to let hubby open doors for me, but not pull me up out of a chair. Makes me feel like my arm is getting torn out at the shoulder. He gets it.

Jan

So true...I felt like a rag doll with the arm being ripped off (my sofa is really lowwww)...

To all of you ladies - thank you, thank you, thank you. To just feel understood - and to give understanding - about this specific set of issues we deal with - has been a Godsend to me.  You have no idea how much it has helped - I don't wish the suffering on any of you - and I know everyone suffers eventually - but to "talk" with others about leakage, etc. - has just made me feel so much less alone - I finally had to say (in email form) to a couple friends and one family member - well, would love to come...but "don't want to be in my depends" - sort of in a joking manner - but trying to hammer home the point - if I can't come, there is a reason!  I think - how many times do I have to explain this - and then , I realize - they aren't trying to make me feel bad - just to include me.  Frances - to be in the caregiver mode and in such distress yourself is all too common  - but so amazingly difficult - and insurance, etc. - just makes ya want to give up at times...so sorry about your weight gain - I am also sort of shy...I understand what you mean about not wanting to be seen...not sure what that's about - it's so dumb - and I tell myself that -people looking terrible out and about all the time - do I care? NO  And no one cares what I look like either -but, if you had some decent looks in your past, and you grew up w/ "putting your best foot forward" and dressing for success and all that - it's hard to sort of get over yourself - and in the end - as you age - that's what you have to do.  It's a life "necessary loss" - did you ever read that Judith Viorst (I think that is her name) book called "Necessary Losses" - that book stays with me and helps me remember that we all have to face loss after loss eventually.  Well I've rattled on too long - please keep seeing your therapist and so proud of you that you are trying to set some boundaries with your mother - you have to - you can't row her boat if you can't row your own....etc. etc. (easy to say, very hard to do)....Thanks to all of you wonderful ladies.

Angie, 

Yes, it was Judith Vorst and Wow! I loved all of her books, I was an addict!

She speaks clearly and with a lot of common sense about a lot of emotional subjects...She helped me a lot at a time when I was dealing with some very complex issues all surrounding my pouch and life with one in a world that doesn't understand.

I think that I would have given my left arm (need my right one for intubation purposes) to have someone, anyone to speak to about my pouch 20, 30 or more years ago. It was so awfully lonely here. With everything that we have learned in the interveening years (pouchitis, cipro and its side effects, PTSD..) my life could have been lived with so much less pain and stress...But you cannot live backwards....only forwards.

I did my best with what I was given and probably more than most people who are healthy...that is all anyone can do...their best. Beyond that you need to build fences...protect yourself from the world that cannot or does not wish to understand.

We have a very long road to travel with our pouches so we need to put ourselves and our health first if we wish to make it to our destination.

Sharon

Jan I know how you feel I love it when my husband does things for me but hate the reason he needs to do them. But understand its his way of helping. But I hate having help in my life at all. I don't talk about it now with anyone except my therapist and I love her. I don't want this to define me and my relationships with people my sister said there are times when she forgets I have stuff going on because I don't complain about it and that's fine with me.

It bothers me so much to see my husband leave in the morning and go for a 5 mile hike in our beautiful parks with the dog. He goes to yoga and teaches it once a week. I go to the one he teaches its all levels and its ok If I have to leave and come back. I thank god every day that he is so healthy and my sons are also. We have been married 32 years now and the only issues we have had in our marriage is my health. I have told my husband several times that I was so sorry that he got stuck with a unhealthy person like me. He gets very upset when I talk like that.

Got a wonderful letter from my psychologist today to my ins company telling them she sees me every 2 weeks and how I have gone down hill since due to doc. having to change my medication to valium suppositories and 8 Imodium the valium every 12 hours that by the way is 2000.00 a month and the medicine that helped the most Belladonna/Opium is 1500.00. So my ins will cover the 2000.00 but not the 1500.00. So I was denied when he or not nice at all medical secretary filled out the form for them to make an exception. Its been 4/06 since I wrote to doctor to ask him to write  them as to how much I need this other medicine. Secretary wrote back 4-07 that they will compose a letter and send it to me via e mail. Have not heard anything. So I am trying to finish up my letter to ins company and my other doctor wrote a great letter. Tomorrow I will be sending him a e mail that I have letter from my other doctor and one from me and am just waiting for his so I can send it in. So tired of all this I cant even tell you.

With this Hashimoto now I fight being so tired all the time.

With the valium I leak 95%of my day and accidents at night.

I take care of my mom full time 6 days a week and my sister takes Sundays. I have another sister about 5 hours  away that is a million air but cant help my mom at all and never has. She is a Narcissist to the bone. I have turned the cheek to many times over the years and last summer was the last straw when my mom had 3 surgeries over the summer and left me in hospital when I was really sick because it was taking to long so she could go home and take a nap. Well no details but we asked her to leave when we brought my mom home. I cant handle toxic people in my life.

I got something from my prescription company today saying now I was in the 3rd category and the next is catastrophe. I have to call them tomorrow and have them explain it to me it sounds like I am now in some kind a donut hole.

When is enough if they don't approve me after the denial with my 3 letters I really don't know what's next. My sister said that she thinks I will feel better if I can loose at the weight I have gained over the last 4 years 49 pounds I think part of that is true. but I don't have any incentives to loose it or so dam tired I just give up on that a lot.

When enough whining from this lady today.

Thanks from the bottom of my heart for listening. Its so nice to not feel like I am so alone.

Frances

Frances - you are not alone - and I get the feeling when you see your spouse up and running at 5 a.m. - etc. - and I've often said, "sorry you got stuck with a dud" to my mate, too. He also says, "nonsense" - anyone who has a spouse who sticks by the other through thick and thin  - has real love - is so blessed - and I am so thankful for my wonderful spouse - 2nd husband - 1st was a dud - he couldn't handle it.  We hear you and care for you and are thinking of you.  There isn't a feeling you have had that many of us have not had or have....you are "normal" - but man, life at "normal" as you age and deal with health declines is a son of a bitch at times - pardon my language - but it is!

Frances, can you email your doctor directly? He needs to be reminded to get this done. Doctors are human, and are super busy, so it is easy to forget. It sounds like his nurse is not the greatest for follow up. I've had instances where I leave a message and it is written on a scrap of paper that gets buried on a desk. That is why I like direct communication.

Nothing is worse than dealing with an insurance!

Jan

I e mailed him today and explained that I have a letter done on my behalf and one from my other doctor. So when I receive his letter I will be able to send all paper work and letters all at the same time.

So I will wait.

Went to my dentist yesterday that I have had for over 25 years and was told he does not take any Medicare programs.

When asked what my ins is and I tell them Medicare they always look at me like your 55 and you have all your limbs why are you on Medicare. I mean no disrespect but they treat you like your another one milking the system. This is what people must feel when they have to say welfare. You are treated bad and that is so unfair.

I would do anything not to have this and be working but its out of my control and I am emotionally exhausted. The stress is making me feel worse. So I cant go to my pcp that I have going to for years and now my dentist and now I am fighting for the only medicine that has helped me that is 500.00 less than the one they will pay for.

Im tired really tired

Frances

PS thank you to all that has taken the time to write to me.

Yes, invisible diseases are not easy to explain.

I am able to buy cheap HMO dental that covers exam/cleaning 100% , but only certain offices take it. The dentist we love left that office recently and opened a private practice and only takes PPO insurance, so we are sad about that. We aren't even on Medicare, but we are retired and on fixed income, so we can't have it all.

It is exhausting dealing with all these bureaucracies!

Jan

Yes, it is Jan.  It makes one wonder - is this better?  Or was it better to just have teeth fall out - everyone else's fell out too - so you didn't look "weird" - etc. etc. Progress - I know it has made certain aspects of life better - but I do wonder.....it just seems like there are too many choices and too much paperwork, etc. to get the simplest thing accomplished.  Well, I know that's nothing compared to having a terrible day of suffering physically - so I guess I should shut up!  take care, dear Jan.  Long live your teeth!

Well no word from my j pouch specialist with his letter.

Found out yesterday that I am now in the donut hole but they cant call it that but it is just that. I called and talked to very nice man and I know he felt bad telling me and you cant shoot the messenger. He said I will have to pay about 1000.00 a month for the next 3 years until I reach I certain amount and then I will be put in the Catastrophic coverage. Doesn't that sound great. They now call the donut hole stage 3 coverage gap. Why does the only thing that works so expensive? I don't know what I am going to do yet. I have to send forms with letters to see if they will appeal the denial and cover it. I have not told anyone yet I just cant. I feel like a liability and a burden to my family and I just cant tell them.  So I cant go to my family doctor that knows me like a book and now my dentist does not take Medicare. God do I feel like a second class citizen.  Its wrong for people to look at you differently if they don't see a limb missing and your 55 and its none of there business and they can think what they want.

Went out to dinner with my best friend last night and it was nice to listen and help her now that she might loose her job. It is nice being there for others it truly makes me happy.

Well thanks everyone and I hope you all have a great and good weekend.

Frances

Hello everyone. I read all of your posts and I fell lower then before. I feel like there is no hope for me and just want to die. For last 2.5 years I do not live I just pass day by day in pain,tears and I feel like empty shell. From very active,lovely,sociable person I went to autistic and closed person with no social life. I push everybody away and I am mad at my body,life..For 2 years I struggled with j pouch operation, Medrol addiction, half of last year I spend in hospital. Finally everything settled I went to takedown surgery in the Sempember last year and I was hoping that's that. New life,no pains,living "full lungs". And than back to hell-artritis strikes. For last 6 months I am in constant pains,I can sleep,every mouve hurts. It attacted my right knee,hip,shoulder and neck. I struggle every day to wake up and go to work and walk my dog.And thats is wholw world to me. My hubby is soldier so I am most of the time alone,my sister lives far away and I can't allow myself to fall in bed. So I am figthing every day. I feel my life is just passing by and I am only 38 and still having lots of dreams,thing to do,I would like to have kids but I think and feel it's the end for me. I want to divorce my hubby and just dissaper in some hole I die. I used to do everything on my on-from housework to paintin my home,mouving furniture etc. Nothing was hard for me. I do not want to show anyone how I feel cause I am scared they think I am week and everyone used to know me like strog,indeppendent woman who didn't need anybodies help.Now I cant lift my right hand to brush my hair. I am so sick of docs my next appointment is for two weeks with my GI and I am thinking "is there any point to visit her?" I started to take glucosamine ,kondroid and magnesium chloride becouse I read it can help with artritis. Sorry everyone for such a long post I just needed to take it out of my chest. Sorry for my bed English and lack of vocabulary becouse English is not my native language. Wish best to you all. 

Hi Branchy,

Please, this is the place to come to cry, explain, complain and be listened to. That is why we are all here. Because we have all lived through the same things. We have all been sick, some of us nearly dying and then we deal with surgeries, pain, depression and post traumatic stress disorder. Plus all of the other autoimmune diseases that come with our disease.

There are a lot of us who suffer from arthritis pain and other joint pain after surgery. It seems as if once they remove the colon the disease finds another place to settle in and start hurting us.

Mine is the right hip, ankle and back. All of that throws my whole body off and then everything else starts to hurt. 

I have found that some small things can help a lot. 

I use a special heating pad. I is just a bag full of cherry pits sewn like a fat snake. (you can make one with rice of some other grains too...just do not use popcorn!!!) You then put it in the microwave oven for about 3 minutes to heat. I lay it on a yoga mat on the floor and lay on it. I put it under my spine. It feels so good. It makes a lot of the pain go away. Then I wrap it around my hips or neck for more relief.

I use an ice-pack on my ankle to help with the tendonitis.

The other thing that helps me a lot is seeing a Chiropractor on a regular basis. 

I see one whenever the flare starts and until it is over...Sometimes it is 2xs/week and other times I can go 2 months without needing to see him...it just depends on the flares.

You are not useless and I doubt if your hubby would appreciate you leaving him because you think that you are. 

That is not what marriage is about. It is about  being there for those that we love when they need us. It is also about letting them be there for us. It is much harder to be the sick one. (my personal opinion) Especially when we are so used to doing everything for everyone else. Being weak and in pain is no fun and it is depressing and demeaning and makes us feel like there is no reason to live. But that is not true. There is alway a reason. It just takes time.

For now you are in too much pain and you have been suffering for too long. 

Like many of us  you are still young enough to want to live your life and have a 'real' life where you can go anywhere you want and do anything without constantly being in pain. (does not really matter how old you are, no one wants to suffer and be in pain)

Can you talk to someone where you are? Are there support systems? Psycologists? Do you live on an Army base? Can you see if there is a support group for Army wives? If there is not one then maybe you can create one.

It could be a project for you. Something to keep your mind busy and do some good around you. It helps you to forget some of your pain when you help others. 

Is there a swimming pool or a jacuzzi anywhere around where you live? Walking in warm or hot water helps a lot too.

I don't have any real solutions but I do understand. 

Do not give up.

Sharon

I'm so sorry to here you are going through so much Branchy. Please remember you are not alone. I struggle every day to get out of bed and make myself do things. I go through many e motions Anger, Fear, Cry, Poor me parties. Why me and when is enough enough?

I don't have answers. I got to therapy every 2 weeks and I truly think it has saved my life. Its my safe place to let everything out. I don't talk to people or my family about it because I am sure they are tired of herring about it or that's what I think. Four years when the bottom fell out and I had to stop working and I felt like a burden, liability and worthless. I have always worked and not working even though I hated my job I have always worked. I have come to terms with that. Its hard when your in a really dark place to see light at the end of the tunnel. But I have found like you I am no longer very social but I went out to dinner with my friend of over 20 years  last Thursday. The little things I count on now, we sat for 2 and half hours and when we left there was no one else there. I almost lost her as my friend at the time when I thought my world was over 4 years ago. My way of dealing with it was to isolate myself from everyone. Did not want to talk to anyone and she is a type A person and she kept being a pest and would not leave me alone and thank god she didn't. Because most of my friends left. Everyone grief's and deals with things differently. She did not understand my way but she stuck around.

So looking forward and also nervous about dinner gave me something to look forward to. She told me at dinner that her church that they were having there annual rummage sale on sat. I asked if I could bake some cookies for the bake sale and she said sure. I enjoyed making them and packaging them up and taking them knowing the church would make some much needed money made me feel good and I can still do things for others.

I take care of my mom and that is draining but through therapy I have really learned to deal with it better and to make boundaries with her.

Its all about baby steps find one good thing to do each day for yourself or someone else and it will make you feel better.

I cant imagine working while your going through so much. But you sound like one strong women that does not belong in a hole at all. Talk to your husband when he is home or find a good therapist its made a world of difference with me.

 I don't talk to my husband enough because I think he is tired of it but that is not what he thinks its what think. People can not read our minds glad that cant read mine lol.

 Every day is a struggle for me I don't always win but I am still here fighting.

 Be kind to yourself we are so hard on our selves.

I have a saying my friend gave me and its on my vanity and I say it out loud every day.

(Be there for others but leave yourself behind)

I care

Frances

Yes, Branchy, we do understand.

I also used to be a superwoman, very active, organized, and independent. Even with the UC, I did OK. Then it all went sideways and I lost my colon. Things were better for some years, then arthritis set in. I made do with NSAIDs, but couldn't take them anymore after a decade. After about six months of lousy sleep, inability to sit or stand for more than 15 minutes, I contacted my primary doc, who sent me to a rheumatologist. Things have been much better since. She diagnosed enteropathic arthritis and put me on biologics when Azulfidine was not enough. Changed my life!

Jan

I agree with all the replies - I've been there - wanted to crawl in a whole and die - just couldn't take it anymore - well, I found out there was some sort of new life after I fell into that pit...I was very worried about being "weak" etc.- and that was actually part of the problem, looking back.  I got counseling and checked myself into the hospital for a week - this was about 5 years ago - I won't say it has always been easy - I will say - my perspective has changed.  I do less now, but I sort of in some strange way enjoy what I can do more.  I used to run, walk, work out, cook, clean, entertain, work full time, on and on - superwoman act - now I go at about half that speed - it took me about 7 years to adjust my expectations - I strongly hope you get some support and if you can, some counseling help - it takes an real paradigm shift in thinking to live with this if it is giving your lots of problems -for most people - this is what aging is all about - a slow decline, loss of power, etc. - but if you have an illness or disorder or whatever - you have to adjust earlier -and yes, it is hard when it is not something people can see.  On bad pain days....I sure did use my heating pad - back then - at work.  I just did what I had to do...looking back, I should have made plans for getting disability - etc. - I just assumed I would continue to push through.  I never did do disability and it's probably too late - and we manage.  But, I really hope you get some support and help and I know the fight with the "powers that be" is awful - but if you could start to keep records and make a plan now - you might get that disability in your 40s or 50s when you can't work anymore (if that happens) - no one told me about this - and it is the one thing I really wish I knew - that said, I was so stubborn and proud, I wouldn't have believed them.  You are not alone, we all do get it, and we care.  So sorry - oh - I don't mean to get into your business - but you might consider an anti depressant?  Or if you have already done that...try some others...I don't like pills either, but at one point, it became that or die...I chose life...and the Zoloft took the edge off.  Clonopin to sleep - used to feel guilty - now I don't.

Well been on the phone for hours on Friday and Monday and today. Trying to get bills paid by Medicare that they first told me they would pay and then long forms and paper work and phone calls and back in the mail it goes. It makes me so angry when the only medicine that helped is not covered and is 1500.00 and the only other medicine that is covered is 2000.00 but does not work. Was denied exception for the medicine that worked due to a medical secretary that did not put much effort into it. God great letter from therapist and they told me to write one on my behalf. Went to Cleveland Clinic 3-18-16 to explain to him how I need a form and letter filled out for them to make an exception for the medicine that helped be covered. Its now 4-26-16 and after visit and 2 phone calls and 3 e mails and nothing. I sent one today telling him I had all my letters done and was just waiting for his. Now I was informed I am in the donut hole for at least the next 3000.00 out of pocket and then the Catastrophic Coverage. I never knew going on Medicare would be so looked down on by people. If I was on Medicaid I would not have to go through all this stuff and fighting for every little thing. It really makes me feel bad for people on Medicaid or welfare its liked we are all lumped together. Its so not right. I would do anything to not go through this mentally and physically.

I called in one of my medicines today for my 3 month prescription and its usually 12.00 and I have no idea at all how much this is going to cost. I am scared to death to here. I think I am going to start looking into I think its extra help with medications. My husband is now retired and if they went by my income I would be approved but they go by both and he is a fixed income and we live paycheck to paycheck but I can deal with that but not paying $1000.00 a month for at least 3 months until I reach a certain amount .

I know he has a lot of patience but when I told him I leak at least 95% of my day and when I walk its chaffed bleeding and then blisters that 1 app 2 phones calls and 4 e mails. Talk about making me feel worthless.

 I think when this is done I need to find another G.I. in my area. I want some quality not quantity.

Definitely feeling like a second class citizen.

Peace to all

Frances

Thank you all for your replays and so sorry to for took me so long. As first to answer some of your guestions. I do not live in military base becouse there aren't this type of accomodation here in Croatia. I tried causuling but just after one therapy doc said that my emotions are normal and I am strong enaugh to survive anything life puts in front on me, so you guess I stop going. Yes I do use heating pads and they help me a little bit. Also warm baths hepl a little. We do have swimming pool in my town but it's cold water so I think it would't do me good. I go from time to time on a massage. Also I send my papers for dissability and I am waiting for them to call me back for some seven mounths now and who knows how much more will I wait. Here administration is so slow,so Frances your time you wait for papers is a drop at the sea here. For example-my doc listed me for rheumatologist and I get appointment in March 2017. So now I must go private and pay. And if I came in that stage not to be able to work anymore but to live with my husbands paycheck and my dissability income it's going to be hard to survive honestly. Dissability income here are belove average and also they depend of percentages they give you. As for advice to take deppresant sorry I am strongly against them. I even reffused to take them when my mother died and I was mess. But thank you for you honest opinion. So at the end I have,if isn't to much to ask, questions for you. Do you all have same type of arthritis?  Did your dissabilities came fast or took them years to slow you down?And Jane if it isn't too much to tell me what kind of NSAID you have been useing and did they mess with your bowels and j pouch?

Best wishes to you all.

(What does't kill you,makes you stronger).

My arthritis is IBD related inflammatory, and now also osteo in addition. Prior to taking biologics, I took high doses of ibuprofen. It worked well, but eventually my liver enzymes went up and I developed pouchitis. So, I had to stop them, except for short courses. I take Relafen (nabumetone) for major flares now, but only for two weeks or less.

Jan

Ok I am so angry sad, confused and feeling so low today. I have been having issues with my Hashimoto disease for about the last 4 months. I sleep from 10 to 12 hours at night and get up tired. My hair is falling out a lot now. I have all the signs that I need it revaluated and some blood tests done. I have been having trouble with my eyes. I am gaining weight like crazy and so tired all the time.

I made a appointment with the Endocrinologist over 6 months ago and since I now don't have a PCP any longer because after I signed up with ins in December I was told that she was on it. So I am 3 months behind on getting my blood work done to see what is up with the Hashimoto.

I actually forgot I made it until a month ago when I saw it on my phone. I called then to make sure that they took my insurance and was assured that they did. They called to confirm my appointment and again asked if they took my ins. she said yes.

It took hours to get all papers from Cleveland clinic and wrote down everything. If it took 6 months to see her she must be great and I was ready. They took all my insurance card gave me more papers to fill out. They took me back got on my vitals and she took all my medicine that I had all typed up and all papers that I knew they would need. She said she would be right in and 25 minutes later this women walks in and cant recall what her name plate said. Sat down to tell me how very sorry she was but there was an error and that they did not take me insurance. I thought this cant happen this was a very important appointment and I really needed help. I was so upset I just started to cry and that is not like me. She kept saying she was so sorry. I kept saying I checked 3 times and was told that they did take my insurance. She said did I check my Medicare book and said no I did one better was told by your staff a month ago and twice in one week.  I said this is not my fault its yours. I have done everything on my end and at that point it had been an hour. I could not hold the tears back and I really tried she kept saying how sorry she was. Would I like a bottle of water? Than she had the balls to say we can still do this if I could pay cash for everything the first visit that is always more and blood work. I said no I can not pay cash. I just sat in disbelief and felt like someone punched me in the stomach. She kept giving me tissue. I asked there Is nothing they could do and she said im so so sorry. After listening to her for 10 more minutes and still could not believe it. I just said please give me five minutes. She did not me to leave this upset it would look bad to everyone when I was leaving so I just left and cried in the car.

Well my PCP after telling me she was on my plan and taking my insurance in march for a sinus infection had them send me a bill that she does not take my insurance after I saw her.

Went to my dentist a couple weeks ago that I have been with for 30 years that he does not take my insurance.

I am 55 now and on a Medicare plan that might as well just lump us all in one Medicare, Medicaid and welfare we are all lumped into one. I have worked since I was 13 and sometimes during my life worked 2 jobs. I did not want to get sick and I don't want this life but to be treated like this its horrible. When I see someone with food stamps I am no one to judge I don't know her journey and I wish her well.

I feel like a salmon swimming up stream only to get pushed back. I finally got after a month 3 phone calls and 4 emails a letter from my Cleveland clinic doctor appealing my denial for the only medicine that worked and a letter from me and a great letter from my therapist that sees me every 2 weeks and know what I am going through. The medicine is 500.00 dollars cheaper. So now I have to wait and am in the donut hole and I have to put out 3000.00 out of pocket before they will put me in the catastrophic coverage stage.

I was supposed to go to my moms after appointment to help her and I told Larry my husband and he said your not going anywhere. The things she needed could wait till tomorrow.

I told him I wish I could go to sleep and not wake up because I am tired of doing everything I should and I was just to tired. He said please don't say that it will get better and he was here for me. But in my heart it wont. But I guess its good that I don't have the balls to do anything like that. I could never hurt all the people who love me. But I am so tired of trying I need something to go my way.

Thanks for listening guys sorry but I just have no one to vent  to.

Frances

So so sorry - you deserved a rant - that is a heart breaking story and sadly, it is all too common.  The system is really messed up - and it's so upsetting when you work hard your entire life and then the so called things you paid into - govt. programs, etc. - turn out to be crap.  It's a scam, really,  You get this when you get older and get sick. It's a scam.  I am so, so sorry and I wish I had a magic wand to wave to make you better.  Can your husband or a friend or someone advocate for you to find a doctor who will take you - you need some help - you are weary and tired and cannot do this yourself.  Can you find a social worker to help?  I know they are overwhelmed too - try to get someone ELSE in your family or friends to do the calling if you can. If not, give it some time and just try to rest and not do too much - and then try again. You are in "overwhelm" now - if you have to, go to ER for suicidal thoughts (feelings you can't go on) - they have to take you, you at least can get bed rest and meals, etc. for a few days and also they would need to set up a GI consult at the hospital.  I was once at such a low point, I was suicidal -this was years ago - I was so ashamed. I went and I don't regret it - and my life has improved a lot since then...it took me being very RADICAL and saying, "I CANNOT do this" and going to hospital to get some help.  Also, if you go - get help from social services for yourmother is you can....my gosh - you can't caretake and be so sick at the same time. Do you take anxiety meds or anti depressants? I hope so.  Thinking of you.

Absolutely no words can describe the anger and furor I feel regarding your situation. Unfair just doesn't cut it.  

The problem is that along withe the bureaucratic abyss that you find yourself in you are battling hashimoto's and the pure exhaustion that goes with it. 

You need some sort of legal aide to pitch in and advocate for you. 

Is there any chance of finding a clinic that does that sort of thing? When mere people's voices are not being listened to you need a lawyer to pound on the table and fight for your rights.

Huge hugs

Sharon 

Thanks so much ladies for your kind words. I don't have any words now. When it is said and done it all comes to money and if you have it you get the best if you don't you get what ever. When I am at the store and I see someone with food stamps and see people roll there eyes I just feel bad for that person. They don't know her journey or what is going on with her. But I have found out that a lot of people lump Medicare, Medicaid and welfare all into one Losers.

We would all do what ever not to be sick. I think the hardest thing for me is excepting that, that I it is out of my control and just need to make the best of it.

I cant believe it but the office manager that came in and told me that they don't take my ins. left me a voice message. I know when she told me that in the office I just lost it and that's not like me and just cried after waiting over 6 months to get in and being told 3 times that they take my insurance I guess I just could not believe this was happening. I barely remember but I left the doctor a voice message from the car saying how horrible I was treated. I also said you could not even come in to tell you how sorry she was. They did offer me a bottle of water.

Her message the office manager must of herd the doctor message and had her take care of it. She again said how sorry she was and if I could call her back and give her the names of the women that took my insurance. I feel the buck stops at the doctor and I know how hard those women work and how underpaid they are I could not do that. I don't even remember there names. She went on to say that the doctor was going to come in but she said she would take care of it. She said I said I just to leave and the doctor was already in with another patient.
What I said is please give me 5 min to pull myself together and she never came back in and so I just left. She said she could see me if I wanted to pay cash for new patient and all tests. I said no I could not afford it. Mind you this is just my opinion she should come in explained it and at least examined me free of charge that's all after waiting over 6 months.

I don't remember a lot of what I said when I left a message but I did say that I thought it was handles very poorly and that I would not recommend her to anyone. She said that she did not want me to leave with a negative feeling and she is a great doctor and she did not want me to take it out on her. REALLY

My husband has been great and I don't like asking for help at all. I do have really bad thoughts but thank god I don't have the guts to do it. I could never leave my sons and my family the people I love with that burden. Like I said its all about money if I go into the hospital its 200.00 a day just for the room and nothing else and after I think 9 days the room is covered. My medicine is 1500.00 a month and I am in the donut hole and have to pay up to 3000.00 out of pocket before they will cover some. Since I had to stop working we live paycheck to paycheck and I have enough guilt about that going from 2 incomes to 1.

Its 10.30am and I am still in my robe and just feel numb about everything. I did call and request a new up to date ins. book for vision and doctors.

I am just paralyzed with fear today and just want to go back to bed. I have had 2 horrible accidents the last two nights. Changed the sheets shower and try to go back to bed. My husband is great I wake him up to change the sheets and says nothing and then I shower. We just a new mattress 2 weeks ours was over 25 years old and was really bad. I got the everything proof cover that you zipper the whole mattress up and I still put the reg. mattress pad on top of that.  

Sorry just rambling and I see my therapist next week. Still no word on my appeal for the medicine that they wont cover and got denied first time. It took my doctor from Cleveland clinic almost a month to write one up and one from my therapist and they told me to write one on my behalf. My therapist said they cant deny me with those letters, so we will see. Even if they do I am in the donut hole.

My mom cant afford anything and I am all she has. I will always be here for her no matter what. She is a great mom and deserves the best and does not know about this stuff only my husband. I don't want anyone to worry about me.

Thanks so much for listening to me. I don't know now what I would do with out you all.

I hope you all have a great day.

So much does turn out to be about money - buying power, etc. - sad, but true. Glad you have therapist appt. soon - glad you have that support and your husband.  I would go on and on with advice - but really, I will just send a hug thru the airwaves.  It's just plain hard to deal with this and insurance on top of it.

I agree. Not much we can do other than empathize. I'm a few years out from Medicare, so just dealing with the HMO for now. At least I know with Kaiser, the transition from individual coverage to Medicare is pretty smooth. All the providers stay the same (but the copays will change). But dealing with insurance and beauracracy is just plain demoralizing. Thank goodness we have understanding family!

And don't even get me started about when they talk about making cuts in "entitlement" programs! Hey, we paid for this. It's not some "freebie!" And on top of that, they try to make us feel guilty for using our benefits?!

Jan

Yes Jan - love the guilt trip for the so called "entitlements" - what a joke.  If they don't want us to have them, then "they" should not have taken the money out of our paychecks for all those years.  Arrgghhh!  And yes, it is demoralizing - and you know all about it being on both sides of the system.  Thanks for always being around to lend and ear and give solid, steady advice. 

Well had accidents 3 nights and today I am in so much pain to walk around the house due to leaking and then the friction thing than blister and then blood. I told my husband even though it was a beautiful day yesterday how I was feeling. I just wanted to stay in bed so tired and down and more it did not say anything. Through therapy since I don't talk about it much to him, because he just feels bad and does not know what to say. I told him later about when I was venting him I just words and a hug. I need for him to tell me its going to ok and hugs lots of them. I don't want pity just compaction . I am learning through therapy to tell him what I need. He cant read my mind and after I told him what I needed it was better. He said he can see it in my eyes and the way I walk and he just doesn't know what to say and I can understand that but a couple words and a hug is all I need. I ended up doing some things outside and felt better the mornings are the worst for me. I sleep over 10 hours and get up still so tired. I have to find another endocrinologist quickly. I am almost out of medicine and I don't have a PCP any to do some blood work. My eyes in the last month have been doing weird things. I think they say floater and I thought it was a hair and it moves but never goes away. Its like a small Polly wag with a little tail. lol The thing that scares me is I have been seeing double a lot and then my vision gets blurry. I have read a lot about auto immune and hashimoto and other stuff that can all be connected in some way.

I wanted to wish everyone a HAPPY MOTHERS DAY.

Peace and happiness to all of you fabulous people.

Frances

Hi Frances,

Happy mothet's day to you too.

I know that you have probably already tried this but there are/were a few things that I could to to help me feel better...

One was long soaks in a hot bath with a handful of seas alts mixed with essential oils...citrus picks up your sports and gives you energy, thyme is anti-infection, mint and eucalyptus help with your breathing and energy too.

You can make them yourself cheaply...I buy 2lb bags of sea salt in the grocery store, fill an old glass bottle partially and then layer with orange peels, lemon or grapefruit, mint or whatever your favorite flower is.

Let sit for a week and then use handfuls in your bath (I make tons of different ones ahead of time and give them as gifts) 

Add cold water to the tub after a while and then switch back to hot.

The change in temperature will give you more energy.

Just a thought for a happy mother's day...

Sharon 

I had not tried to hot bath then change to colder water Sharon - I will if it would give me some energy - I guess until I kick my lastest issue's butt I am gonna feel bad - I put on general discussion I had scope Friday and have ulcer and h pylori and that's why I've felt so bad - so, they are doing biopsy on the ulcer and then I'll go on 2 weeks of antibiotics - God, I hope it works.  I am bleeding, in pain, and miserable -a lot.  Now that I have ulcers, no NSAIDS - just Tylenol - Tylenol makes me sick.  So, just pain I guess.  I don't even want to start down the road of pain meds yet - it's too early and I just think it'd be a road to nowhere.  I am sure if I get to level 6 or higher (on a 1 to 10) pain scale, I'll have to see about pain meds.  I'd say I'm crusing at a 4 or 5 now - and I just live with it.  Damnit. Thanks to you wonderful people and yes, Happy Mother's Day you dear friends.

I am so sorry Angie 

This chronic and "unmanageable " pain business is so unfair! 

I am like you, I am terrified of going down that slippery slope of 'real' pain meds...sticking to Tylenol and nsaids when my gut allows it and reserving the tramadol for those days when turning over or standing up causes screams of pain.

Don't know if there are pain management clinics here...I would have thought that if there were they would have sent me by now.

I am pissed at myself for the moment. My appt with the rhumy that I had to wait 3 months for ended up being the day I had the occlusion and I had to cancel...now I need to wait another 3 months.

Plus this vacation was supposed to be 11 days of intntense physio and me going home 'pain-free ', instead I am still flaring up and down my whole right side.

Sciatica must be contagion because hubby now has it too (the side that he broke his foot...amazing that it took this long to appear )...he is starting to understand me better! Poor dear.

Will try one last day of treatment then home and back to work.

Why can't we get a break?

Ps. They changed my physiotherapist yesterday and the new one told me that the other guy was doing everything all wrong for my condition. I am covered with bruises up and down my hips, legs and back

 Red welts too. She said that he shouldn't have broken the muscle tissue that much..let's see what she does to me today.

Sharon 

Lambiepie posted:

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! 

Hello everyone,

Gluten is a major cause of inflammation, try a gluten free diet. This was recommended to me by my Osteopathic Doctor.  

I hope this helps.

M

And for aches and pains, leaky gut etc... Bone Broth is a great help. Please take a quick moment and look up the benefits, it is an unbelievable, cheap, healthy way to better health. 

Thanks to all for your support and help.  I agree about anti inflammatory diets and do try to eat this way when I can.  I will look up bone broth - anything to help.  This new GI lady did a real number on my pouch area - it's like she beat the hell out of it or something - have never had this much pain after a scope.  I don't know if she knew what she was doing...my retired GI, who trained her, was so great - no pain ever after a scope.  I am going to take the suggestion above - I am going to take 2 more ibuprofen - it did not seem to bother my upper GI much and I have got to do something about this pain.  It's not the "screaming" kind -but it's making walking and doing much of anything very hard.  I kept thinking by now it would go away - not yet. Scope was Friday - so I will give it a week and see. Thanks to you all for support.

What is the diet everyone seems talking about? Someone said go GF, soy free, dairy free. I am a peskatarion so only eat fish. Is there a book? Since my disaster with the other endocrinologist I am making appt with new one. I have 4 pills left don't know what I'm going to do than a retna specialist due to floater seeing double sometimes and vision going blurring alot. Still have not heard about denial letters to approve med. That I can't afford. Mornings are so hard for me because I am loosing hope.                     FRANCES ko

Sorry to hear. Please look up bone broth online.   You can use fish bones as well. It can help a multitude of things. Good luck.

M

I sort of went gluten free, meat-free, diary-free for the whole trip, (other than a couple of slip ups I was pretty darn good...did not go sugar free)...it sort of, kind of helped...at this point I need to be food-free for this inflamation to go away (and possibly floating in a warm sea for 60 days with no contact with dry land!)

I was off of the carbs for close to 25yrs eating mostly potatoes as my carbs, very rarely rice or pasta when I had a huge craving...I was a 'Fit for Lifer' and took the way of eating seriously...now I have fallen off of the wagon...not sure if it is age, menopause or just my body that has taken its revenge on me after all of the surgeries, medications, treatments and wear-and-tear. Whatever it is, I hate it!!!!!!

Meat was a rarity (for financial reasons more than anything else) so I kept the diet without doing it intentionally...yes, I was better than now. I lived off of fish and occasionally chicken with raw-milk (mostly goat or sheep's milk) cheeses and yoghurts. My diet was about 85% raw. For professional reasons (working hours, impossible lifestyle...no time to eat) I did the Greek yoghurt and fruit most of my life (still doing it now) during the daytime...nights are usually soups or salads or steamed veggies (mushy)...it is a very pouch friendly and healthy diet but I am a sugar addict (I admit it) and thus kill all of the goodness with that.

I am starting to believe that I will never again be pain-free, be able to sleep through the night or walk without a limp...this sucks. 

I have been using bones in various forms for soup bases for my whole life (cheaper than meat)...didn't matter which (fish, chicken, beef or lamb)...it is my go-to comfort food when sick but I do not do it enough when healthy...it is very satisfying...if you want to push it to the extreme then add tons of fresh herbs to the broth for your trace minerals and root vegetables (parsnips, carrots...) for both consistency and flavour. Beware of the root veggies, they can be very gas forming...

I am home now and hurt almost as much as when I left but I have gained in mobility...

I will be having that stupid anurysm checked and possibly clipped next week...not happy about it...At all. 

Sharon

Sharon - it just sucks to get older and go through all this.  No two ways about it.  I wish I could help you - I care about you and you have inspire me so much.  You have quite a fan club on this site - we just plain think so much of you and all you have done to show us the way you press on despite so much pain.  I wish I could make it STOP!

Thanks Angie,

I am just a bit down due to the weather and the effect that it has on my body...also the 7 tons of exams that I have to correct (yes when you have over 300 students you have over 300 exams to correct...argh!)...I remain sitting on the sofa or a chair all day long...not a body-friendly position for me...I do better standing or walking.

I think that the biggest problem is expectations.

I should really post this subject separately...

How to coordinate your expectation with the reality of your body and its capacity to heal...

I have high expectation and low healing capacity...it is a set-up for being let-down...I still believe that my body can heal itself. I still believe that I will get better. I still believe that I am not ready to give up the fight. I still believe that this is not over. I still believe in miracles!

So, I am bound to get a little depressed after blowing a ton of money on a 'working vacation' where all I did was fight the good fight and now I am almost back to where I started...minus the money.

It is not just about getting old(er)...it is about aging gracefully...and without pain. I cannot imagine a life where I cannot get up and walk to somewhere, anywhere that I want to...walking is my freedom...and not being able to do it normally is killing me...

So back to the Ethiopath and chiropractor...

Sharon

Keep fighting the good fight

OMG I am sitting here shaking. I sent the appeal letter with my doctors great letters and they told me, don't worry it will get approved. I am in shock just got off the phone with Medicare. She said that my appeal has been denied even with the letters and all the paper work. I cant cry, she said to call the 2nd level appeal on Monday and see what the next step is. I'm so tired of fighting for everything. I don't want to live like this but trying to except and going through all this is just to much. So they Pay for valium supp. at 2000.00 a month but wont pay for Belladonna/Opium supp. at 1500.00. I'm in the donut hole and now tell me I have to pay 4895.00 out of pocket now on covered medicine and after that then I'm  in the catastrophic coverage.

The reason I have been on the medicine is my j pouch is about 15 years old and had tons of cases of pouchitus. Then about 4 years ago starting having horrible pains that would last about a few minutes and then had no control. My GI doctor who has since retired got me into Cleveland Clinic the next day with a specialist. He scoped my and said that my pouch has become very week due to all my infections and the pains where it having spasms that cause me to loose control. He put me on the Belladonna/Opium and it so strong but after 4 years used to it but it did change my whole life.

Does anyone have this problem and take anything for it?  The doctor when I went in and explained that Medicare would not cover it he said that there was only one other thing he could recommend and that was Valium supp. and about 8 lamotil a day. I leaked about 95 percent of the day and we all know what happens to rear when that happens. So I cant afford to take the 2000.00  valium now till I pay about 5000.00 out of pocket and no coverage for Belladonna/Opium.

I want some quality of life not quienity . I have not told anyone and moved from my chair. I cant tell my husband he is retired and on fixed income and what I get from Medicare is hardly anything.

I'm so sorry for unloading but I am truly at a loss now. My hashimoto is getting worse and we know what happened with that I have to find another one that takes my rotten insurance. I have to go to a retina specialist on wed something is happening with my vision. I try so hard to stay positive and put on my brave face by boys are 27 and 30 and they live near us and they don't have a clue and that is the way I want it. The only option I think I have is take them till they run out and see what happens. I might write to the manufacture of the medicine to see if they can help me.

Thank you from the bottom of my heart for listening to me. It means more than you will ever know.

Frances

I am so sorry - I don't have any answers for how to fix any of this - it is awful and the "system" is a mess.  I can't remember if you ever found a social worker?  or some kind of advocate?  Forgive me if you already tried this.  This is why people are so angry in America - one of the reasons - we pay into a system that does not work.  We hear stories (just saw this yesterday) about the hospital charging 645.00 for "the band aid" - etc. - so much fraud, deception, etc. going on it is insane.  This is going way out on a limb here - one time - about 3 years ago - my grandmother was in a nursing home.  Her roommate had some type of cancer - this was in the state of Indiana - somehow - that was where this very sick woman could get care as she had no money.  Not saying you want to do that - but nursing homes often know how to bill - I have zero idea how this woman, who was only in her 40s, got into that place.  I am throwing anything out there as you need help.  I am truly so sorry.

I meant to reply also to Sharon - yes - expectations are an issue - and everyone is different in terms of what and how to handle that question.  For me to cope, I had to lower mine - but that does not mean I don't want to live or enjoy my life...I just changed my definition of what that was going to be.  I was a people helper and still am - but not like I used to be.  It's hard to let go of who we once were - and it's ok to keep fighting the fight - you are a very smart, determined person who craves a lot of activity and doing good things, teaching, travel, all of it!  And I say good for you - and I also say - I am so sorry when you get ready to go and do and it turns out crappy.  (yes, crappy!).  If I lived where you do, I'd be much more motivated to try to travel - been in Europe twice - loved every single bit of it.  So, I have no easy answers - but don't beat yourself up too much for wanting to do all these wonderful things.  I find it very inspiring (as I have told you before).  That said, obviously, maybe a change in mindset when travelling.  Example:  my sister, who also has the pouch and has had her struggles - went through a period that was awful - about 3 years of it- but she had young kids and a go go go husband with infinite energy. HOw to cope?  She got therapy for about 2 years - she would go on vacations, but build in time where she could be alone, read a book, and miss "this or that" thing on the trip.  She just had to.  Then, she could join up and feel able to do other things on the trip.  It was a new way to think for her - and hard, but it made her trips less of a let down.  They travel a lot - still - and she is actually doing better now - but I remember those years and she was kind of like, "if I get out and do with husband and kids for about 1/2 the trip, that's going to have to be good."  She worked on this mindset with her therapist and actually, I sort of got into my new way of thinking by talking to my sister about all this.   I am rambling - I think you do a lot and maybe just need to cut back a little (I know you have).  I know it sucks to go on an expensive trip and miss out of parts of it.  I have no easy answers - but boy, if I could wave a magic wand....for all of us suffering with this or any other affliction on this planet!

Frances,

No words, just anger, dissapointment for you and your situation, incomprehension for the stupidity and blindness of a system that is supposed to help us...and only makes us worse....

One thought, is it possible to buy your meds in Canada...I know a lot of Americans who get their meds that way because they are so much cheaper there...not sure how the presciptions work trans-border but you could look it up...there is a huge business in the border towns...if you know someone in Canada or near the border (like in Buffalo or Detroit) maybe you can make arrangements or maybe they do email ordering????

I am shocked at the price gouging that is going on in the US..you could litterally buy your meds for a year in France for less that the Price that you pay for 1 month  in the US! Prices are fixed by the government and not the Big Pharmaceutical companies...which makes prescription drugs much, much cheaper.

Angie,

Yes, this readjustment of expectations is a huge mental effort and jump...I keep expecting the pain to go away...I keep expecting to wake up with no pain and not suffer with every move...But I have not found a way to make it dissapear...went to the movies last night (1st time in maybe 6 months) and it was torture the last 1/2hr...couldn't sit still, couldn't find a comfortable position...put my fist under my butt to try and ease the sciatic...raised the leg up, turned both pigeon toed...was grateful when the film was over.

Next trick? Having a body builder walk on my back (jump rope?)...something has got to give.

I am almost off of work...Still have about 6 classes before the end of the month and then summer vacation...and looking for some kind of exercise routine to help my body and get me back into shape...

I will keep fighting the good fight...

Sharon

I still have not told my husband about the denial yet. In the 32 years of our marriage we have never had any problems except my health. The quilt is overwhelming me. It angers me so that this medicine is so expensive and we don't have it. But if we were rich or well off it would not matter the best medicine the best care. But for everyone else its oh well. The pharmaceutical companies are evil. My brother in law is a rep and I see the waste and how much he makes and its a sin. He is a drug pusher. The lobbyists are terrible there are more of them than different drugs. They live in Michigan about 4 hours have 3 houses on lake Michigan, Florida on the ocean and don't know where the third one is. Have not talked to me sister in over a year and my relationship is over. I turned the cheek so many times when she has done terrible things that the last straw was helping not helping in anyway my mom. I take care of her 6 days a week and my other sister gives me a  day of on Sunday. My other sister will not help her with her time or money and she does not work. She is a Narcissist to the max. I cant be around her she is toxic.

I am going to write to the manufacture of the Belladonna/Opium and see if they could help me. I was on it for 4 years and my husband insurance took care of it all and I paid 6.00 a month. Does anyone take this medicine? If so let me know how it is going for you. My doctor said there is nothing else but the Valium supp. 2000.00 or the Belladonna/Opium 1500.00. I have a hard time believing that.

 I wish I saw my therapist this week but I just saw her last wed. before this all happened. I have to tell my husband but just cant bring myself. I feel like I am a burden and a liability anymore. He has never made me feel like that but its how I feel anymore.

 Well we live in Ohio and it has snowed off and on all day, no one could believe it. There is a frost advisory tonight. I have had to cover new flowers last night and tonight. Its crazy.

Have a nice Sunday

Frances

Frances - I could not have said it better - I think my anger is so much at our system - yes - many friends who are drug reps - that industry is dirty and criminal.  Everyone knows it.  What we pay for drugs and care is beyond ridiculous in this country and it is getting worse.  Our health insurance now costs more per month than our mortage....in the earlier years - it was about 1/4 of our mortage.  It is out of control, ACA did not help us at all.  In fact, as people warned me, it made it worse for us.  I just don't know what to do and don't know what anyone who is the average Joe ( that's us - one retired school counselor - one teacher) - is going to make it in the future with health care expenses.  I really don't know.  Sorry to be negative - I know I should stay encouraging...but this system is robbing people blind and it is not necessary.  BTW, if you are a pharm rep - I mean no disrespect -one of our best friends is one - as is his wife..they used to be teachers and got out and went into pharma - and I wonder if they were not the smart ones.  At least they have some money. Sigh. sorry to vent.

Hi Angie you said it all. No I am not drug rep. My brother in law is and have not spoken in many years due to other things. But I saw first hand how horrible it is.

I need to know if there is anyone on this site that takes Belladonna/Opium suppositories? Like I said before even with my doctors wonderful truthful letters to Medicare they denied me to help pay for it. The only other thing he gave me was valium suppositories with I think 8 limotil a day. Its did not work leaked 95% of my day and it was really bad and is 2000.00 a month but they will pay for that. But that puts me really fast in the donut hole. It will take now 5000.00 out of pocket to get some coverage but not for the drug that really helped. I'm beyond confused. I was going to call or write the company who makes it for help.

I see my therapist that wrote on of the wonderful letters to help with my cause. She said with all the letters they surely will not deny me. She is going to be over the top furies when I tell her they denied me. I called to find out if they received it 2 weeks ago and they told me over the phone. But I have not received anything in the mail or in writing yet. She said I could try one more time its called 2nd appeal something and its sent to a independent company to review and see if they can help. I don't want to do anything until I get the deniel in writing. Then she said if that did not work I could get a lawyer OMG are you kidding.

I guess I am lucky to have a 3 month supply still. I am so scared when I run out. Before I was on it the pain no control and I was so sick. I cant bear to go back to that. That is why I asked if there was anyone here that takes it. Everything I have been given has been suppositories. The doctor said when I told him that the valium was not working. He said there is nothing else but the belladonna/opium left, there was nothing else he could give me really? There is only 2 drugs that help? I have hashimoto also and my new great Medicare ins. does not cover my pcp or my endocrinologist. Waiting now over 2 weeks to get new health booklet of doctors that I can go to. I called the other day and they said its in the mail. I feel overwhelmed, angry, when I start talking about it I have a panic attack. I don't what to do next anymore. My depression is at a all time high.

You work your whole life sometimes 2 jobs and you get sick and they make you fight for everything and then deny you. It makes me incredible sad.

Thanks for listening

Frances

Frances - I don't know about the suppositories - if I did, you know I would share the information.  I feel your pain- yes, you work so hard and pay in to the system - only to find out it's sort of like health insurance - the tactic is "deny" and hope people will get worn down and they will go away.  It's sickening and disgusting and makes me so mad.  Now I know why all older people get so mad.  Getting older is tough enough - but the total lack of respect, the non stop haggling the "system" makes you go through to get the simplest things, the lies they told us about paying into the system .....it's just such an enormous ruse.  I am only 53 and I feel like I have been fighting this my entire life.  (Or at least since my diagnosis at 23).  I have maintained a very positive attitude about it all - until about 7 years ago - and since then,my attitude goes up and down.  I have good days and bad days and I try to remember to be thankful for good ones.  I think the hardest part is that you are so, so tired and you need someone to fight for you - and there is no one to do it - but you.  As you said, if you are not wealthy, you are screwed.  A lifetime of hard work - and it's not enough.  I'm not asking for any handouts here- I really am not.   That's the irony of it all - they make you feel like you are- but I'm not.  I am not on disability - never wanted to fight the battle.  I am not on a ton of medications (yet).  I live quite simply - I don't demand the system to do much for me - but the simplest thing - one procedure - and they want thousands of dollars for it.  The insurance tries to deny anything, etc. etc. - very bad system in the states.  Frances - I have tried to buy meds in Canada - so far, it was too much hassle to fight to get them - but I will have to fight to get them eventually.  Thanks for letting me rant.  I know we are not alone in this at all...for me, it's weird as my family all have much more money than I do - it just worked out that way - I don't begrudge them that - at all.  But they have no idea what this is like - and in their defense, I dont' tell them.  It's embarrassing.  Sigh. Thanks for letting me vent!!! 

It's all so true what you said. I am 55 and had to stop working about 4 years ago. I called yesterday to medicare to see why I had not gotten my second denied with all the doctors letters telling them that it's the only thing that works and do much more in the mail yet. They told me over the phone 2 weeks ago and I needed it ASAP so I could start the next appeal and she told me the sent it to me at same time they told me over the phone. She went over my address and she said she would send it out again. I said so someone got all that information  about me and my problem. I was so angry that someone could read all that but there was nothing I could do. I was sent another dept to see why I still have not gotten my medical book to find a new pcp endocrinologist dentist. I was told by medicare that they were having problem with printing the books for over a week now and they would get one to me as soon as possible this is medicare OMG are you series. It has become a part time job. It's to much anymore. Well I have to get to my mom's I take care of her 6 days a week now for 5 years. It's very stressful but she is my mom and I love her. I hope you have a good day.

Frances

Frances, I know this will not help right now, but it might be a good idea to start researching all the available Medicare supplement providers in your area. I have a feeling that it is not just Medicare that is your stumbling block. My dad had B&O suppositories prescribed a few years ago and he was on Medicare at the time with a Senior Advantage supplemental plan through Kaiser, so Part D was included in his plan. It was covered the same as any other brand name drug. I'm sure that the doctor had to indicate exceptions in order for it to be covered.

Another thing is that the donut hole is being phased out (again, I know this does not help now, but at least something to look forward to). http://www.nolo.com/legal-ency...e-drug-coverage.html

Jan

Great helpful advice from Jan - as always - such a sweetheart you are Jan.  Frances - yes, it is a job.  I've watched my parents fight it for years - my Mom does it mainly - and she's really good at it, but she's about had it.  They are both 80 - and have been doing this fighting so long - how they stand it I don't know.  No choice, I guess.  This is the entire debate of "living longer but not better" etc. - since healthcare is such a moneymaker... it's just an impossible system and I feel bad for anyone working in it and anyone dealing with it.  The only upside is when things are going relatively well - a day with no major battle to fight - just regular battles - you are sooooooooooooo thankful.  Hugs to all of you on this thread.

There was just a piece on the news here about the French government giving hell to the pharmaceutical companies because of a cancer treatment drug that costs €40,000.00 (yup, that is forty thousand euros/month) to treat cancer!

They are trying to force Big Pharma to lower their prices or they will  no longer cover the cost (!!!!!)...the fact that they did cover it sends me into a tizzy! 

Who did they cover? I didn't get my mamo covered and that was 50€!

Keep fighting the good fight!

Sharon

Truly unbelievable what big pharma etc. do - it's all so screwed up.  Frightening commentary on humanity, I'm afraid.  I just don't get it.  But I know I  could live where it is worse.  But, the state of healthcare is really, really tragic.

I am sort of going to take the other side of the argument for a second here (please do not lapidate me for it but as a professor this is how my brain functions...I always need to see both sides of an argument).

Big pharma spend 10-20yrs developing new drugs and molecules. They spend millions on R&D, pay the top scientists and researchers, go through 10 different phases of testing until they reach the human trial stage then need to clear the FDA and every other sort of administration...then they have about 2-5yrs on the human testing stage...Where the drug may just be dropped for reasons varying from adverse side effects to not proving it effectiveness...

Finally it reaches a test market and they get the pants sued off of them because someone got a rash, headache or worse, stroke from the product (recent scandal here...5 stroke patients in the final stage of human trails...2 died...product pulled off of the market before it ever got sold).

After all is said and done it is practically a miracle that they ever get anything onto the market at all...

Once they do...they want their money back. And they want it fast. Big time. In bundles and boodles and baskets. Because they have 50 other drugs going through various stages of R&D and testing at the same time.  And they need the Market to keep supporting them through all of those.

You do not make a drug like you make a dress...Design it, source it, manufacture it and deliver to the store...that would be tooooo easy. 

So big Pharma are playing bingo with every molecule and drug that they bring onto the market..plus they are fighting against all of the copyright laws that release it into the public domain (meaning that any other company can now manufacture and sell it 10 or 20 yrs down the road without ever investing a penny into its development)...so they need to recoup their investment before that happens.

Or they will never put the money, time and effort into making more drugs.

So they need to find a balance...the balance is high prices the first few years for the drugs and then slowly as they reach close to the end of their copyright or trademark (or whatever it is called for drugs) they start to level out their prices so that they become competitive with the upcoming generic version of their drug. Some insurance companies insist on only covering the generic version (which is not always identical and can react differently with different people) which means that they lose out again...so some big pharma companies have bought smaller laboratories that manufacture only generics so that they can cover both ends of the market.

They also fight against Chinese knockoffs that are sold over the internet (very, very dangerous to buy drugs over the internet unless it is from a respected and well known lab) at 1/100th the price. 

So there you have their argument...simplified. I do not defend them or accuse them...I just explain. 

Hope that this helps to clarify some of the absurdly high price gouging that goes on.

ps...certain countries like Canada & most of Europe that have a Social Medical plan that covers drugs force Big Pharma into lowering their base prices or they will not cover their meds...that is called leverage and it works very well...so many drugs can be bought across the border much cheaper if you have a valid prescription. They even have buses that take people across the border to fill their prescriptions (6 months is the max I think) at more reasonable prices.

Sharon

My late wife participated in 8 clinical trial studies for cancer, so I can appreciate the costs involved in developing new drugs.  However, I am offended that users of these drugs in the USA are getting stuck with costs that should be shared by those in other countries who pay significantly less for them.  I should not have to order a prescription that costs $20.00 per pill here, but just over $1.00 in Canada.

I agree absolutely! I just wish that there was some sort of 'universal system' that would allow the cost to be spread across the world as opposed to making the Americans pay so that others can pay less.

Somewhere, sometime...our government is going to have to start negotiating for us as a country to lower prices and costs...

Here, since both medical school and research are funded by the government the doctors and the labs have to 'give back' (sort of like when the army pays for your education) and that can substantially lower both costs and prices.

In the States you pay for school out of pocket, top shelf prices for meds and doctors and people still think that they can 'stick it to you' because you are American and thus you must all be rich.

Unfair. Untrue.

Sharon

I agree that pharma is not all bad - nothing is generally "all or nothing" in life - many lives saved by these drugs - giving people more time with their loved ones on earth.  I agree with Bill - if it were "a few more bucks" - and I know that is all relative - it would be one thing - but it's often not - it's 20 to 1 or something....we the "average" people are going broke and I've heard it said by policy makers that healthcare and aging population will bankrupt this country.  It is quite a mess. I have no easy answers.  We could go back 100 or so years and well - people just died.  Many of us here on the forum would already be dead. I'm not sure if quality/quantify, etc. etc. can every be figured out in any rational way - it's an ethical and moral dilemma.  Have you all watched "How to die in Oregon" on Netflix?  I'm not saying I want to die - but this was a great documentary on the subject of death with dignity...another controversial topic.  As you guys know, health care keeps many alive way too long and the suffering in nursing homes is unfathomable - and it's all about the money they get.  Well, I'm off to the races today, aren't I?  I hope you all are having a good day.  Mine is good, and I take a good day now with such amazement and gratitude.