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At work this morning (a business school in the downtown sector of Paris) and my directrice called me into her office for a second...and asked me to Not use the staff toilets (that are situated next to the assistants and administrative people)...her reason?

That I block up the toilet with "something" every time I go.

Firstly, there is nothing that comes out of my pouch that isn't liquid. 

Secondly I don't use gobs of tp....so I do not get it...

I was cool responding, fine, no problem. But it has been hurting me all day long...I rarely use their facilities, I never stop it up...so what is the deal?

Mortified.

Sharon

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What??? This does not make sense given her reason. How comfortable do you feel delving further into her explanation? Could it be scent of output because mine could make your hair stand on end. But that is neither here nor there. You are a competent, talented, impressive, making a difference in young lives kind of person. Do let her make you feel any less. Boy, having a healthy digestive system can really make someone out of touch with the rest of us! 

Just ask her why she would think it's you. If she isn't familiar with the intricacies of your output and is just making a guess as to who the toilet clogger is, maybe she needs to be educated. But nor have you posted what the dynamics of your relationship are or whether it really matters if you don't use a bathroom you never or rarely venture into.

Quite frankly the answer you gave likely sounded like an admission to her in all likelihood. 

Situations like these have come up in various office buildings I have worked at and the protocol for handling it is always the same, to post a sign over the toilet as to what not to put in it, rather than bar someone from using it. But if you are staff you get to use staff toilets- if you aren't you don't get to use them. Or so I would think.If on the other hand you are using some  handicap privilege to access toilets you otherwise wouldn't have access to, others may have complained.  This is all just speculation on my part because I don't know what all the facts are. I know that I have asked for and received accommodations as far as bathroom privileges when I had UC from various schools I attended. It's less of an issue since I got a J Pouch. Anyway good luck with it. I would have handled the situation differently but I don't walk in your shoes-plus I don't generally react very well in such situations when they arise. Such as the other night when my condominium neighbor parked her car in my guest parking spot. I am a speak his mind kind of guy for better or worse, but I think it can be worse in some situations.

Last edited by CTBarrister

It appears that someone higher up on the food chain needs to give the directrice more work if she is spending time monitoring who is using the bathroom and what goes on in there.  We all know that our Sharon is not the one plugging up the john and such an acquisition is totally out of order.  Perhaps someone could place a plunger in the bathroom for use by whoever is committing the offending act.

This is France and I am a Piece worker meaing I do not have tenure or a long term contract but only semester to semester (that is the conditon of 90% of all teachers here in post High School education) so I can be dropped in a minute.

I am a good teacher and the kids love me (to the extent that a student can love a teacher)...but this is rediculous...I have gone there twice and found it clogged (there are 2...that face directly into the office and the coffee corner as if they were in a house...no antichamber)...and I only work there Tues and Thrus...so either morning it cannot be me. It is just that I am always the first one there...

I don't want to turn this into a thing...so I won't use it (the semester is almost over anyway and we are moving sites) with the hope that it cloggs agian without me being present...

I am mad. If I had been tenured they could not say or do that but I have no status...or power. This just brings up all sorts of pain and bad feelings.

I shouldn't care but I do.

Sharon

im sorry Sharon. we all feel your pain, your anger. its enough that we spend any time visiting the loo to have it highlighted as an accusation is only more offensive, uncomfortable.

the irony of course is that the clogged toilet is a fear many of us have faced but to be slapped with an unwarranted accusation, a brown letter if you will is inherently inhumane and creates all kinds of ill will, poor feelings etc.

I guess given the uncomfortable lack of tenure/position and the proximity of the end of the year, perhaps the better path is to move on and away. distance yourself from the unworthy and unfeeling accusers.

keep your head high and imagine a fiery poo bag lit on the directrice's doorstep. hopefully that might bring a smile to your visage, turning that frown upside down.

 

 

 

Thanks guys, 

I agree that they may be using the clogging of the toilet as an excuse for something else that is bothering them...but I have never had a complaint about noise or odour from any employer or roommate or hubby...I have had my pouch for 36yrs...I should know by now if it is a problem...so...I will shut up and take it.

My last day is tomorrow.

Who knows if I will be taken back next year (the annual anguish of not knowing if I have classes or not for the coming year) and I will deal with whatever comes...

(but I like the flamming bag of poop idea....thanks)

Sharon

The Commencement ceremony is tomorrow night for my graduating class and I have asked hubby to join me...I do not have to courage to go alone (and it is very far away)...I finally told him what was said and how much it is hurting/bothering me...he was furious. And indignant.

My best friend who is in the employee defence business told me that I should meet with her face to face (in front of a witness), have it out, explain that biologically she is accusing the wrong person and then ask for a public excuse and explanation.

She says that it was defamatory, that I was accused and sanctionned without the possibility to defend myself and that it is highly ileagle to 'forbid' someone from using the washroom!

I just want to write a letter telling her she has accused a handicapped person of the one thing that is physically impossible. Attach a letter from my surgeon saying why.

I hate that this hurts 

Sharon

absolutely outrageous situation.  you are on the high road, which usually isn't crowded, so have faith in yourself.  if it were i, which is different than you, i would approach her and request that we re-visit our conversation.  in no way make it personal and push the problem off onto some other situation, such as the plumbing being poor because it is an old building (perhaps that is the situation.)   i would explain that i think there are some misunderstandings, that i have appreciated using the staff toilet because of my handicap, that i would be willing to have a plumber come in to correct the problem, or something on that order.  remember to deflect it away from her and nothing personal, other than mentioning that you have a gi handicap (i usually keep it simple and say that i have the gi system from hell.)

then again it is the end of the year, but i'm assuming your contract will be renewed.  would be better to get it settled now, if for no better reason that you don't fume over it for the summer.  good luck!!  janet

As I mentioned earlier in the thread I would have handled it in the manner suggested by your best friend, although I think asking for a public apology is a bit much and unnecessary..............however I think it should have been settled in that manner immediately.  From what you said your original post, it sounds like you made statements to her consistent with an admission of the alleged conduct.  One of the first things I learned in first year of law school contracts class is that silence or words other than a denial are often deemed to be an acceptance or an admission of a statement when the circumstances are such that one would be expected to offer a denial.......anyway you are not in court on this one, so it really only matters in her mind.  It's likely that you are not a confrontational person and I have many clients who assiduously avoid conflict and confrontation, and come to me because they couldn't communicate, directly and in person, something that in their minds would have created a confrontation.  But then I get hired to do it for them.  Virtually all of the business litigation matters I have right now resulted when direct communication of this nature didn't happen when it should have.  I understand that a lot of clients do not want to behave in a manner that is viewed as litigious, but at the same time, many situations in our lives (including most importantly for us on this board, medical situations and interactions with doctors), require a person to be his or her own best advocate.  I have had countless conversations with personal injury clients who articulate symptoms and issues that are nowhere discussed in their medical records, and when I ask them about that, they don't really have a good answer on why that is the case.  Stand up for yourself, and speak your mind, and these situations can be defused quickly.  Anyway I know the relationship and job status complicate matters somewhat, so I hope you understand that I say all of the above just to give you background on my own feelings about dealing with similar disputes, although they are usually over money and property and not bathroom use.

Last edited by CTBarrister

I understand perfectly...I stated flat out that 'it was biologically impossible to be responsible for what she was accusing me of' and that my handicap precluded it...She shushed me and told me that I was forbidden access to the staff washroom from then on...no discussion possilbe (she is a steamroller)...

Tomorrow is the graduation ceremony...I am going to honor my students and hubby is joinning me for the very 1st time (yeah for hubby!)....not for the staff.

If I feel up to it (and if I can hold hubby's hand while doing it) I will confront her.

If not, I will hug 60 graduating kids that I love and move on.

Sharon (the woose)

Sharon

Hi guys,

Well I did go to graduation and hubby came with me. (I sort of clung to his hand and hid behind him til I saw all the kids...then l let go). She was there but she came and went and didn't come near me...(who was afraid of who)

The kid were great and the director of the school congratulated me on my good work. 

Hubby wanted me to say something but it was inappropriate to the circumstances so I smiled and ate. I  will talk to him at the teacher's confrence in June. 

No, she did not suggest alternate toilets nor solutions. I  want my tenure right now and will fight for it but if she causes me problems I will take it to the prud'homme which is a french board of review for this sort of thing. My handicapped status makes this a "case of jurisprudence " and thus I will push it!

If I get tenure then I will swallow it and bide my time.

I had the occlusion 2 days later and suddenly I had other things to worry about...am on vacation now in an all inclusive and am living off of full fluids...can't risk another occlusion while out if the country...at least they have great yohurt here!

Sharon 

 

 

So far so good.  I have 2 hours of aqua gym  in ice water every morning  followed by rest, soup and tea for lunch, a nap and then 2 hrs of physiotherapy in hot water  and massage (torture)...today I walked a mile with no limp and no cane.

I have 10 days of this...my gift to myself (and hubby) . I need to get past the flare and get mobility back in my hips. 

My pouch is doing fine but the occlusion site is iffy. It aches. I massage it while in the jacuzzi and try to unknot the area but it is stiff and sore.  If I eat solids it feels like an hour glass... (sort of like a lapband in the wrong place.  

I know that I cannot break up the adhesions myself butthe massaging does help.

For now this vacation feels like hard work but it is worth it.

Too bad I can't  eat the food...it looks amazing! 

Sharon 

 

 

 

 

I tried eating solids at lunch (chicken and rice) plus lots of fluids and a creamy dessert. .. didn't make it 10 minutes before it felt like a fist had grabbed my gut and was squeezing tightly. Been burping non-stop since then. 

No blockage but a serious slow-down. 

Hubby has been checking out my post bathroom visits...comes out syaing, "nope, no toilet paper clogs today"...he is being cute. Plans to give me an official  certificate from a knighted architect stating that I do not and cannot clog toilets.

Got a love the guy.

Sharon 

Just when I thought that I was doing everything right I overdid it and am mildly (!) Flaring. 

Got woken up at 4 am in pain on the right side, all joints but especially the elbow and forearm. 

Opted for Tylenol instead of tramadol because of the occlusions...don't want to risk slow downs. 

I also ate a brownie last night... wondering if it might be a contributing factor? I'd pretty much been off of the carbs since I arrived. 

It's a game of roulette... you just never know what is going to set it off.

Did much less today...ate less too. People stare at my plate at the buffet...I look like an idiot. Soup, a couple of onces of fish and a mashed veggie or yogurt...I scape the cream off of the cake, give hubby the cake and eat the cream...we make a fine pair. 

The staff keep asking if I dislike the food

For now more Tylenol and bed.

I hate having to be careful about everything, how I walk, how and what I eat, drink, sleep....not overdo anything...underdo it all.

Like someone stole my freedom of movement and choice. I hate living in constant fear, especially on vacation. 

Sharon 

 

 

Yes - it's roulette - well put.  I think my vacation expectations are so low now - if I do go - I know there will be days when I'll have to just sit it out...it's so frustrating and it's not how I want it to be- but it is how it is.  Damn the brownie if that was it - who knows?  That's the thing - there are times I do know what set it off - but that is about 10 percent of the time - the rest is - who knows?  Rest up and hopefully you'll have a better day today or tomorrow on your vacation. 

Thanks Angie 

Yesterday tuned into a nightmare with a blockage threatening to turn into a full blown occlusion. Joint pain all down the right side, nausea, burping like a sailor and moaning in bed. Chills and fever under the quilt. I am on bloody vacation in a Mediterranean seaside resort and locked in my room running to the bathroom and crying. I work so hard all year awaiting this week, plan it for 6 months and now I am vomiting my liquid diet! Darn, Damn, Drats!

I slept with an ice pack on my ankle that exoded in the middle of the night, I thought that my pouch leaked! 

This morning I am sipping fluids. 

Hubby says bed rest and heat. 

To day the sun is out so I will try to enjoy it...no more brownies...soup.

It is better to be sick on vacation then not be on vacation at all.

Sharon 

 

What a bummer Sharon, and still manage to keep in touch and be in good spirits. Amazing!

on train to nyc for doc appointment. Purpose is to get in that hospital  system for annual check ups and case of emergency. Easier and more fun than Cleveland. Have long list of questions for stoma nurse. Then two operas, run around nyc, friend's play opening, visit with friends and I'll be exhausted.  

Hope your vacation is relaxing. Peace, janet

Sounds amazingly wonderful.

I love the idea of becoming 'afiliated' with a hospital, you get all of the advantages of a large institution and Broadway all in one!

Nice work.

I ate light today and did little...just enough not to hurt anything else...doubled up un the nsaids and Tylenol...thank goodness for soups...a different one at ever meal. 

I'm laughing because I am at an all-inclusive and I cannot eat, drink, take the free Zuma or yoga classes, go on excursions or for a wslk! But floating in hot, bubbly water makes up for all of the rest.

Home in 2...

Sharon 

 

 

Ok, so I am home now...went back to work 12hrs after I got here (grrrrrrrr).

Rainning, cold, stormy...no way to tell if this self-imposed treatment did any good with this weather...I do know that I have had 2 of the worst days in terms of public transportation and running around in years...brutal!

I hurt. I had been hoping to come home pain-free and that did not happen so I am dissapointed but at least I was able to do the running around without a cane so that is a plus.

I threw myself into sugar, carbs and junk upon arrival (argh! old habits die hard) so my inflamation is not happy...didn't sleep last night because of it.

You can run away (and hide) but your disease will always find you. Not fair. I am pissed right now because so many things hurt. Ice packs on ankles...did not get rid of the tendonitis (that was my goal) and have so much sacroiliac pain that I have added the Nsaids to the Tylenol and doubled up on all dosages (I was hoping to get off of at least one of them)...

My pouch/gut is allowing me back into the world of solids (with some complaint)...that is a good thing but that darn occlusion site is still painful and dangerous...I will obviously have to have something done about it...the semester is almost over and I will spend the next 6 weeks having tests, appointments, treatments and minor surgery (some just for comfort sake...cyst removal etc)...what are the odds that I can go back to my 'vacation diet' and give up solid food again?

Sharon

ps. the only one who loves this weather is my gardenia...I envy her...she is blooming, I am not!

Hi Sharon, 

Hope all is going great as can be on your vacation..you totally deserve the best of times ... As for the school restroom situation, you are on solid legal ground...especially if you had nothing to do with the rest room probs she ascribed to you..horrible...imo, it seems to be a lame attempt at using an excuse to essentially discriminate against your condition...Yoiu must be an awesome teacher, so perhaps this summer will give you a chance to perhaps find a better place for your career or job..maybe stay in the same system to keep your time towards tenure...or perhaps you may get a chance to speak with a 'higher up ' administrator about the situation...hope all gets straightened out...again, have a great time on vacation...will always remember the advise and help you offered for my own situation...Take care...   Sincerely, R

I know if we all pushed hard, we could get restroom situation "accommodations" - but it takes so much effort - and the power that be don't want to deal with anyone with any health condition - they want us to show up at work like robots and teach.  Been there Sharon - they really just don't care.  Sad.  But, bring in a rich kid with a "disorder" and schools will go over the moon to meet that need.  Teachers - they don't care.  Pisses me off.

Thanks Josh,

I hope that life and your health are being kind to you and that you are doing really well.

For now I am on summer vacation (still correcting exams) and will not be physically back there (if at all) before Sept.

My final position is if they give me tenure I shut up...if not I send the letter that my lawyer has cleaned up to the director, my directress who is the one who started this and the Prudhomme council for discrimination against my handicap.

I do not want to and I hate getting involved in legal matters but I they dismiss me (do no renew my contract which is their right) then I will kick up a fuss.

For now, I have the students on my side...at least I have that.

Sharon

 

A footnote to the original rant....She got fired!

The person who refused me access to the staff toilets just sent out an email stating that she will no longer be with us next year...No, I had nothing to do with it. No, I do not know what it means for me professionally since I do not know her replacement but she is now officially gone!

Didn't even have to send that darn letter!

Sharon

Some people have a hard time working with others when they are put in positions of authority. This whole situation reminds of a lady we made our office manager and later had to fire. She was a competent paralegal and had seniority, so we believed that the logical progression was to make her office manager because the firm had gotten larger and we needed one at the time.

Once given some authority over the other ladies in the office, she developed what I would call a serious "Mother Hen Complex." She micromanaged and didn't do it nicely. She let the other ladies know who was boss rather than treat them as equals which she basically was except for her title. She developed into a divisive cancer. Sadly, she was a completely different person out of the office. It was a personality issue in the office. Her successor was another paralegal who did a better job and actually became something of an advocate for the other paralegals to the point where I felt she was their de facto union leader as she would complain about me giving them too much work. I told her I am a machine and they gotta keep up with the machine, LOL, tongue in cheek of course. Now we have another office manager who is a bit more educated than her predecessors (has a masters degree from Fairfield U., which commands some respect) but she doesn't politic and is very diplomatic both with the paralegals and the attorneys. She tries to stick to her job of overseeing the office's finances and administration, and doesn't exercise her authority either to micromanage others or advocate on their behalf, sort of allowing them to behave and do their jobs. So their are different approaches to handling these authority positions and basically I think it's all personality and style. Your directrix who was fired sounded like a micromanager and they eventually cause irritation with too many people and either have to dial it back or get fired. Hopefully she learned something.

I am not going to post what I am about to say in a separate topic...regarding Karma..But right now I need to rant in all caps and bold print...but will do so discretely...My dad died yesterday. I got the phonecall here in Paris at around 2:30pm...8:30am EST...

I was shocked but weepingly grateful that my brother called me himself...and thanked him profusely. Hubby had to call him back for details because I just sat in shock. He informed him that the funeral would be at 11am the same day...And that I would miss it.

As the news sunk in and I went into overdrive...Cooking (Sharon's default setting) for the family dinner...I got an email from my cousin in the evening...he found out from the funeral home's guest book that my dad had in fact passed, 2 days earlier, and that I would have been able to make it if my brother had called on Weds.

Some people are born mean and petty. They live their lives that way and die that way.

I do not know if there is a special place in hell for people like that. I choose to believe that there is. 

Or maybe just Karma. 

I do hope so. 

For now I weep for my poor dad who was buried alone without his daughter (or any other family) there by his side to say good bye.

S

ps. I will probably delete this in a day or 2 but I needed the rant.

Sharon, I am so sorry to hear about your dad. I cannot imagine how you must feel to be excluded. If you believe in an afterlife, you must know that your dad knows your heart was with him, even if you could not attend the funeral. What anyone else might think does not matter.

No need to delete your post by the way. Entirely OK.

Jan

 

 Sharon – – I send my sympathies that not only were you  unable to attend your father's funeral,  but the family dynamics so cruelly excluded you.  Families can be so destructive when instead they should care for, let alone love, each other.   Whether your family is close  or not doesn't provide license to treat one unfairly, such as the disrespect shown to you.    Certainly difficult to repair  relationships when lines have been crossed-- I to speak from  unpleasant experiences.  I hope that,  at sometime in the future, you can salvage some essence of the family.   

 You have so many health issues going on that I just simply can't understand why a sibling couldn't reach out to help you. You are such a helping, caring person  and  deserve much more than what you have gotten.  I appreciate the karma that you put back into our support family. Peace, Janet

2nd sleepless night in so much pain that words do not cover it. Weds night I woke up at 3am in so much pain in my right shoulder that I thought I had dislocated it (in my sleep???) (that pain that you get in your shoulder post op from trapped gas that will not go away?) ...coughing so much that I couldn't breath (I am not asthmatic)...I have been that way ever since (started at around the time that he actually died...not sure if I believe in that stuff but maybe, I felt it)...is the physical pain there to help deal with the emotional pain? Other than the first few hours and a couple of phone calls to those very close to me back home that brought out the tears, I have not cried.

My dad spent his life in a waiting room. Waiting for me to go in to see the doctor. Waiting for the doctor to decide what to do with me. Sitting in a surgical waiting room waiting for me to come out of O.R....walking me down long green hallways (why are they always green?) to O.R.

He spent his life waiting for me to heal, then to be happy...then he had a stroke and spent 20 yrs waiting for me to come home to see him (I did every year, sometimes twice...I even bought an apt next to where he lived so that I could stay longer and see him more)

Then he waited for me to come so that he could die.

He died exactly 1 month before I could get there...

I know that without his strength, love and courage I would have never survived this disease. He was my courage, he gave me the will to live and fight even when I wanted to give up. 

He dragged me across the city, country and even across the continent to specialists, to have experimental procedures, radical treatments and eventually horrible disappointments. But he never gave up on me.

I do not know if he ever really lived his own life (what parent with a sick child does?) but he certain helped me to live mine.

I know that my escape to Paris hurt him terribly but in the end he understood it and was even proud of me...that means a lot (he used to ask why I had to go so far away to make him proud, couldn't I have done it closer to home?)

Maybe now, finally, after 20yrs of hemiplegia, pain, suffering, amputation and indignities he is at peace...I do hope so.

Sharon

 

 

Thank you both Jan, Janet,

2nd sleepless night in so much pain that words do not cover it. Weds night I woke up at 3am in so much pain in my right shoulder that I thought I had dislocated it (in my sleep???) (that pain that you get in your shoulder post op from trapped gas that will not go away?) ...coughing so much that I couldn't breath (I am not asthmatic)...I have been that way ever since (started at around the time that he actually died...not sure if I believe in that stuff but maybe, I felt it)...is the physical pain there to help deal with the emotional pain? Other than the first few hours and a couple of phone calls to those very close to me back home that brought out the tears, I have not cried.

My dad spent his life in a waiting room. Waiting for me to go in to see the doctor. Waiting for the doctor to decide what to do with me. Sitting in a surgical waiting room waiting for me to come out of O.R....walking me down long green hallways (why are they always green?) to O.R.

He spent his life waiting for me to heal, then to be happy...then he had a stroke and spent 20 yrs waiting for me to come home to see him (I did every year, sometimes twice...I even bought an apt next to where he lived so that I could stay longer and see him more)

Then he waited for me to come so that he could die.

He died exactly 1 month before I could get there...

I know that without his strength, love and courage I would have never survived this disease. He was my courage, he gave me the will to live and fight even when I wanted to give up. 

He dragged me across the city, country and even across the continent to specialists, to have experimental procedures, radical treatments and eventually horrible disappointments. But he never gave up on me.

I do not know if he ever really lived his own life (what parent with a sick child does?) but he certain helped me to live mine.

I know that my escape to Paris hurt him terribly but in the end he understood it and was even proud of me...that means a lot (he used to ask why I had to go so far away to make him proud, couldn't I have done it closer to home?)

Maybe now, finally, after 20yrs of hemiplegia, pain, suffering, amputation and indignities he is at peace...I do hope so.

Sharon

 

 

Sharon, I'm so sorry for your loss. May it be of some comfort to you to say that maybe your dad was able to let go because you weren't there. We don't know what people are thinking when their time to leave us comes and we can easily torture ourselves trying to fill in the blanks. How sad that, with the correct information, you could have attended your dad's funeral. Sad, too, about dysfunctional family dynamics. Please try to sit with the idea that your dad was so proud of you and would have done anything for you. I hope you feel better physically and emotionally. xoxo

Sharon, I am so sorry for your loss and the unfortunate family dynamics. I, as I suppose many of us in this world do, have a family that has its quirks to put it mildly. When my father passed a friend had a very wise point, it doesn't matter long illness, sudden illness, we are never truly prepared for the loss. My father was in hospice and passed one evening when I was on my way to the apt as that night my mother decided to stay but my brother was still there, as others have said who knows what the process is, one of the nurses said he passed after I left because he knew he could. Always a difficult and dreadful process. Be kind to yourself and know your father loved you as you clearly loved him and he knew that too without a doubt.

Thank you all for your kind words...funny how the greatest kindness comes from 'others', those that we do not know (physically).

I think that this disease, (or any long term disease with consequences), has a devastating effect on families. Jealousy, misunderstanding, incomprehension etc are often part of the problem.

I know that in my family's case it was all of the above.

As a child who was born sick and lived my life between hospital visits and surgeries, I got used to all of the physical pain and suffering (but never the humiliation of it all). I was an outsider from very young who depended on my family for support.

There was often no one else because I did not have the time to meet others outside of the hospital.

That put a heavy burden on my family. 

As a lot of you have said, the nature of our disease makes it something that we tend to hide (especially in the 60's - 90's). No one talked about it. You had to stay home. You didn't discuss colostomy bags and leaks and accidents with others...my horrible brother threw out at me last year that we do not discuss family business with outsiders...that was something that my dad said a lot regarding my health...don't tell. Don't let them know. It changes how people will look at you, their opinion of you etc...

So...once again, I am left alone in my solitude...

As a Tennessee Williams wrote in a Streetcar named Desire, 'I depend on the kindness of stranger'.

Sharon

Sharon - yes - it was to be "hidden" - in those days - as still now - a health problem is in some quarters something to be ashamed of - it's so bizarre.  Make it one to do with GI (or I imagine many things - mental illness, sexual health, on and on) - and in this strange world, it's not to be discussed.  The only stories the press loves to do is the "hero" stories - he/she has "x" and still climbed Mount Everest, etc. - I get the need to be a heroin in one's journey -but because of this stories - it's left many people feeling very "less than", inferior, etc. - there is a guy who does a video on youtube talking about this very issue  - I believe his wife has MS.  There is a fine line between being in victim mode all the time - which , my dear friends on this thread - NONE of you fit - and being able to live in some kind of truth? if that is the word.  The truth:  I am sick today. I am in pain today - I am always in some pain, but todays' is over the top - and since pain is not supposedly "measurable" and is "subjective" - that's another ball of wax.  I agree with Sharon and Jan - cyber world friends are in many ways better friends.  Perhaps it is because we don't have the pressure of "dealing with" each other in person.  Of "making that invite" or whatever.  It's an interesting phenomenon - I used to think it was bad - that we were all "on our screens" etc. - but as I age - I am seeing so much good - and this board is a prime example.  I can be who I am here - and I am beyond thankful.  Sharon - please tell us you are feeling a bit better - I am thinking of you and all of you! Love, Angie

Excellent points, Angie! An invisible disease is a double edge sword. You tell people what you want about it, or keep it to yourself. It is nice not to be pitied, but it does make it difficult for others to understand. My arthritis is more visible, and it does not make me feel better about it.

Cyber friends are perfect for me, in that there is that sense of belonging without it taking over my life with my family and local friends. A perfect fit!

Jan

I see alot of cyber friends here.  No meanness.  Snarky people.  Just a good place to relate an experience.  Give advice from that.  Or get advice from someone's experience.  Or better yet.  To come in here and get things off your chest with no judgment! Because we have all been there and understand.  Just a good place to be and there are not many places where you can go on the Internet where people are polite.  That's the part I like. 

Richard. 

I do not know if the word 'better' is going to fit me for a while...maybe numb would work?

I am in physical pain, but less so thank you codeine...for all of my surgeries It was a point of honor to drop the pain meds when the i.v came out...just tylenol or similar...now I can barely move my arm...sleeping through the night is impossible...so the codeine dulls the pain...and allows me to not feel..Which helps my brain and heart and soul right now too.

My best friend just flew 5000 miles to be by my side...I could not live this without her...my twin soul, my double, my daddy's other daughter...so at least one person on this continent who knew him can reminisce with me.

She has been there through teenage IBD, gracilis flap surgery (x2), Pouch surgeries so numerous that we have given up counting...she has handed me clean clothing in public washrooms, filled my syringe (and bought them for me!), changed my stinky dressings, carried my leg-bag for me and laughed with me until my tears flowed (she has also handed me her credit card and told me not to worry that as long as she was alive my surgeries would be covered)...now she had been to the surgeon with me to have my sutures out, yelled at him (yes, She yells at surgeons!) for the type of suture he used and allowed me to cry in her arms.

I could not exist without her.

Right now she is sleeping on my sofa like I slept on hers for 8 months and 5 surgeries...

Yes, you guys are my saviours, my life's blood, my north, south, east and west...she is my soul.

I could not survive without all of you in my life.

Sharon

Also sympathy to Sharon on losing her father.  Yes - you guys mean A LOT to me. I'm getting a bit weepy just reading all the note above.  Jan  - you are right - I do not want to be pitied - so this is a safe zone to express pain/suffering - to others who I know also don't want pity - they just want to be heard and understood.  Also, I agree - I don't really want to go to support groups and have it end up being my social life (although my social life is not all that grand anymore - ha!) - cyberspace friends are an entirely new part of my life - and I know I keep saying it - and you guys will think - we've heard you say it enough Angie -but knowing you are "out there" has saved me.  I feel so much less alone in this now.  I need to do my part and get back to being like Jan and others of you who are so good at answering new people's boards. I got off track - I need to give to this board too.  I've gotten into "take mode" on this thread.  I need to whack myself upside the head, as it were, and do more on the board for others.  Sharon - so glad your friend is there.  Wonderful - I think you are really unique, Sharon - and I mean that as the highest compliment - I think you probably have more friends and fans than Lady Gaga!   God bless all of you.

Jan - thanks - you have inspired me beyond measure.  I adore you and feel you have been a tremendous gift in my life. To all on this thread - may you feel the connection I feel to you and may we all know we are not alone in our struggles.  I love the judgement free nature of this site.  It's a little slice of heaven in what at times feels like a long, heavy slog uphill.

Hi Guys, 

Well, the 1st week of mourning is over and the rest of my life begins again as an orphan...although you cannot call it that when you are over 50 I guess...just someone who lost both parents...

The loss is great...huge really. Not that you can compare it to anything else...just that it 'is' and nothing else is ever the same again.

I try to think back about who I am and how I became the person that I am (good or bad) and I know that my dad is behind most of it...

He was never a 'pick up a kitten kind of guy' but more 'save a baby squirrel from starvation in the winter' type.

He taught me not to give a guy a nickle towards food but to buy him a hot meal sitting down in a decent restaurant (my mom was green during the whole meal!)...he taught me to help the kid in the next bed because just because you were suffering did not mean that someone else did not need your help too.

He taught me to put aside my pain to help others.

He never gave in to his pain...but always had a kiss, a flower or a crooked smile to give to those in needed.

In the hospital (when he was amputated 2 yrs ago) he kept kissing the hands of the nurses who treated him...told them that they were beautiful and would whistle a tune for them (he could barely speak by then).

So, in that spirit I will keep up doing what I do and trying to be a better me in helping those who need it...

Angie, you will be able to give once your pain is under control and you feel strong enough...for now you take what you need to fill that need...do not force it...just let it come to you....We all suffer in greater of smaller ways, some daily and some sporadically...there are no rules.

The one who has suffered their whole life is not better off than the one who just started...you never get used to it...but maybe you become wiser and more able to handle it...

Just enjoy the good moments and push through the bad...

We are here...WE are Here...WE ARE HERE..(direct quote from Horton hears a Who) ...we will always (God willing) be here.

Sharon

ps. Thank you all for being here for me

S

Sharon, my mom passed away five weeks after my first surgery. Her words in my mind are what guided me through the next four. I am my mother's daughter and it is clear that you are your father's. He will continue to guide you - from all the memories you account here, he already has. A parent couldn't ask for anything more. Many hugs to you right now.

Sharon - sending love and prayers across the miles.  I have always heard losing both parents at any age makes one feel like an orphan.  You gave a wonderful tribute to your father - and yes - you are always giving in spite of your suffering -that's why you have so many who care on this site and I am sure in your life in Paris you have many, many friends.  It's just you.  As we all move along in this crazy, strange journey - may we believe there is a purpose to all of it - even if we cannot fathom what it is.  I don't know any other way to keep going without thinking there is a point to all of this!  Obviously, to love and care for each other is key  - but it seems to be all about learning and growing one's soul by loss after loss after loss as you go through it - it's all very mysterious.  I pray your father is at peace and yes, we are here...now.  It's all we ever have.  I still tend to have some ridiculous notion that things will get easier - and I'm old enough to know better...they might - and they might not...it's a roller coaster, etc. etc. - I just think your Dad had to be wonderful to help make YOU.  I know your husband will be a rock for you in your grief.  Sending love.

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