This is hard for me to admit but I am still suffering from some sort of PTSD.

Hubby says that I am obsessed with medical programs (Grey's Anatomy, Dr House, all medical documentaries...) and that I only feel happy or comfortable or at ease in a medical environment. 

He isn't wrong. 

My dad watched WWll documentaries his whole life to the point of obsession...When I asked him why he said that he was 'looking for himself'. 

I don't think that he was actually looking to see himself as a kid in a concentration camp but looking for his childhood, something familiar...the life that he was living did not resemble what he understood as a kid.

That is how I feel. My life does not jibe with my childhood. I grew up in hospitals. That is where I feel...safe. 

My mom was a nurse. I helped her study for her exams when she had to have her diplomas re-validated. I read Grey's Anatomy and the Merric manuel from end to end. That is what I understand. Not the hobbit. 

Hubby can no longer stand my Dr House marathons etc so I stay up late to watch them when he goes to bed. 

Am I the only one? I feel like no one can understand me unless they have lived through what I have. And no one here has so I feel lost and lonely.

Is this PTSD?

Sharon  

Original Post

Skn69, im not sure if you have PTSD or not, but to me it sounds like you are looking for answers and perhaps depressed.  My dad has PTSD from WWII.  He is terrified of water.  And we lived at the beach, go figure!  He was part of the Normandy invasion.  Day 2.  Went he was getting off the ship, boat, whatever it was, all he saw were dead bodies floating in the water. he saw a lot of stuff when he was in Europe.  But I can tell you this, he has always freaked out if any of us were in the lagoon at the house or if one of us was in the ocean.  Not that he,ever came up on the beach!  As long as he didn't see it, it was ok, but if he saw it, he just plan went nuts.  Ever since 9/11, he is now obsessed with the news.  I think PTSD is more of an intense reaction, I'm not sure.  Maybe your interest in all these medical shows is just that.  I watch them too.  Greys is one of my favorites.  House made me crazy, but it was a good show.  And maybe you learn something.  Just enjoy them!  Husbands are a pain in the butt anyway, half the time they don't get it!

PTSD is a distinct set of symptoms. It is not uncommon among those who suffered prolonged illness. I agree that a fascination with medical dramas and information does not equate with PTSD. They might if they involved intrusive thoughts, obsessions, and nightmares that interferred with your ability to carry on with your daily life.

 

Having some neurotic tendencies does not necessarily rise to the level of needing professional help. On the other hand, if you feel you are losing your ability to cope with with your losses, then maybe it does. 

 

Jan

They use to call it "shell shock" for soldiers coming home from war.  It's called PTSD now and it isn't just soldiers that have it.  There are varying degrees of it, just as there are for depression and anxiety. I was diagnosed with PTSD along with major depressive order and anxiety.  I'm a lot better due to working hard at it by going to therapy and by following the advice and doing the exercises required.  

 

I don't think watching all medical programs is necessarily a sign of PTSD. Now if you came down with the same symptoms as is on every show then you might have a problem.  I liked House and ER and many other medical shows.  I also watch mostly drama who done it or is doing it shows. The shows are all alike in that there is a soap opera or underlying plot line of the characters lives.

 

What I don't watch anymore is situation comedies and most reality shows. I've never watched any of the housewives shows.  I need something that has an underlying puzzle to engage my mind with. I bet you are the same - solving puzzles.

 

You get out and exercise and work hard as you have a demanding job.  Do you have PTSD - I bet you do but you don't have a crippling case.  You get up everyday with an agenda/to do list and you work hard.  Watch your medical shows. I don't think they are a sign you have PTSD or make it worse.

 

You are a role model for many, including me.  I admire your drive Sharon.  Don't pick on yourself.  It's not like you are watching porn! 

 

Last edited by TE Marie

Thanks guys,

What I neglected to mention during my midnight post (2am more like it) was that I cry.

I cry when someone in one of the shows dies or doesn't get the treatment or gets mistreated, misunderstood or browbeaten by a parent etc. 

I never cry for me or my losses. I don't cry when in pain. I don't complain when it hurts. I suck it up and internalize it all. I barely ever take pain meds, just anti-inflamatories. I don't like to show weakness. 

But these shows let me cry. They allow me to let out all of the pain. I can pretend that it is for them an not me.

Jan, No nightmares, obtrusive thoughts etc...just the usual..;don't suffer fools gladly lately either. Not PTSD, just stress. 

Right now I am dealing with some 'normal' problems linked to menopause. My body is falling apart. Ligaments and joints are permanently inflammed. Sciatic. Sacroilitis. Tendonitis. I have finally admitted to myself that it will never get better. I'm trying everything. Refuse narcotics because they make me nonfunctional and block my guts. 

I don't care about getting old, I care about falling apart at the seams. I used to climb 1100 steps at the park and was proud of it...that was less than 2yrs ago. Now I barely make it up 1 flight (70 steps) and have swollen knees for 3 weeks. 

So I am sort of mourning the loss of hope. Giving up on believing that it will get better and accepting the reality (it sucks). 

I never had a childhood and adulthood was a constant battle. Now 55+ is looming and the thought of living in this much pain forever (or worse) has me sleepless, scared.= and despondent.

Jeffsmom, I love puzzles, I love those Who-done-its. I love figuring things out before the Doctors. They take my mind off of reality. 

yup, I am hooked. 

Am I depressed? probably. Who wouldn't be. I want to be pain-free and light as air. I feel 90. Psyco therapy can't help this. Just a Grey's Anatomy marathon. 

Still haven't been able to get in to see my GP. Not availible.

Last Thurs I forgot to take my meds when I got home from Commencement. Tossed and turned in pain all night but couldn't bring myself to get up and go downstairs for the meds. It was horrible. 

Someone out there have a miracle in their pocket?

TE, How do you do it?????

Sharon

 

 

Hey, if TV schmaltz gives you an excuse to cry, no problem with that. I get not wanting to slow down and make adjustments in your life. I turn 60 this year and there are many things I cannot do today that were simple when I was 55. Forget about how robust and athletic I was in my 20s (backpacking, tennis, rollerblading, you name it). But I am not ready for the rocking chair yet. I suppose that when the pain stops, that is when I will know I am dead!

 

Jan

Sharon, I'm so sorry for all your pain.  I can't even to imagine having to live with it.  I watch my son suffer as well.  It breaks my heart.  I told him the other day that he was my superhero.  he smiled and said thanks.  To add to his misery is that he has Aspergers.  So he has had more than his fair share of struggles.  He never had a friend until last year, his very first friend, someone who actually lives close by, not an Internet friend.  I have to say it is saving me thousands in Therpy!  And his attitude after this last surgery is amazing g.  I can't believe its the same person.  You need to laugh, get out of the house and find something funny.  I don't watch much TV but what I do watch are the medical shows and I like NCIS, Law and Order.  But the Batchelor is my guilty pleasure.  The shows on USA are great like Suits, and oh, I love Scandel.  I just found a neat show on E called the Royals.  I love anything to with England and the Royal family.  This is totally fiction, but good.  Like a modern day Dynasty.  But my point is, don't give up.  Never give up.  i had a shitty childhood, abousive  mother, no father.  I married my mother, verbally absive husband and my darling son, too.  It was a Pete and repeat situation.  My point is we all have something.  Whether we see it or not, we all have crap in our lives.  I used to tell this to Jeffrey every day whenhe would come home crying From school.  Giving up is not an option.  Menopause is a real bi***.  I'VE been having hot flashes for over 12 years.  I'm on HRT even though I'm at a 50% breast cancer risk.  

Something happened with the ipad, it froze!  If you don't want to take HRT, I would try Estervarian, give up,caffeine, and carbs.  That in of itself, wil help you.  And that may be part of the issue.  We tend to cry about nothing.  It's okay to feel sorry for yourself.  But at some point you have to make yourself a priority.  See your primary and get some Cymbalta.  I suffer from major depression and major anixity.  I get that part.  But being on Cymbalta is a life saver for me.  It is also used for pain management.  And it's okay to morn the loss of your body.  I learned that along time ago.  I can't do the things I did at 30 either.  A year ago I could go to the gym and walk 4 miles an hour, and do it 3 times a week.  And lift weights, and go to yoga, that is until I broke some tiny bones in my foot, which threw my hips and back out.  I ended up with 2 pinched nerves and 5 bulging disks.  I was unable to work, I work retail, I couldn't stand for more than 10 minutes.  But this is not about my problems.  Something I would recommend is yoga.  It has helped me so much.  there are lots of different disciplines.  Restorative would be good for you.  I don't know where you live, but there are lots of studios everywhere.  But you have to find something to laugh at.  Something I also is find the things I'm greatful for.  You realize that there is some good in your live and it's not all bad.  If you want to talk, send me a private note.  Oh, I'm turning 60 in August!  But I'm not letting it stop me.  I've almost died three times so I must be here for a reason!  Hang in there, try to find the positives in your life, and look for the laughter!  

 

I sounds like you've had a difficult road Jeffsmom.  I understand what you are talking about but it is different having all the medical issues we have because ours are not going to get much better.  When you break a bone it can heal.  Most medical problems we face in life are ones that we will recover from.  

 

For instance I can't do a lot of yoga because I have permanent neuropathy in my feet that will never heal. I can't maintain my balance so all I do are stretches.  I've tried Cymbalta and it was a nightmare for me.  I had hope as it is one of the fibromyalgia drugs. Lyrica and Savella didn't work for me either.  I know people that thrive on Cymbalta and am glad for them.  

 

It's not as easy as getting on a certain drug when one has a multitude of medical diseases, conditions or syndromes.  Drugs for instance can interact with those you need for something else and so forth.  When every avenue you turn is a brick wall or some other health problem it is very depressing.  

 

My mother was physically and emotionally abusive too and my husband has been emotionally abusive as well. That has been an on and off again thing during our 39 year marriage. I too will turn 60 this year. I was told that when we are abused as children it affects how our brains mature leaving some of us with more pain receptive areas than "normal" people.  The doctor that runs the Mayo Clinic's FIbromyalgia and Chronic Fatigue Clinic explained it all to me.  He showed me the differences in MRI's of a FM person and a normal person's brain. I'm not sure I buy into his theory as I had a high pain tolerance level until my UC got so bad it was finally diagnosed. I've gone from being a high functioning person to being totally disabled.  I have a handicapped parking permit that I only use on days I absolutely have to leave the house and need to use a cane to walk. My husband has to drive me a lot of the time and I can no longer drive the 3 hours by myself to see my elderly father.

 

I have bad falls where I've slammed my head and slammed my entire side of my body on concrete or tiled floors.  I just fell down some stairs 2 weeks ago getting another badly sprained ankle and several huge bruises on my back.  My husband's installed hand railings on both sides of our stairways and modified the stairs from the house into the garage.  I could go on and on but will spare you everything. Just glance below at my signature section to see highlights of my other health problems.

 

It is not mind over matter for me. I did that for years and that is part of the reason I've ended up in such bad shape.  I can't "suck it up" anymore.  It irritates me when family or acquaintances try to fix me by saying that all I need to do is walk more or change my diet to whatever craze they are on.  They don't understand and I realize it is hard to empathize with something that you've never experienced.  

 

I had to sell my profitable CPA firm 15 years ago because I could no longer work more than part-time.  I also had to sell another business that I owned 50% of 6 years ago. These were mainly due to my fibromyalgia but UC played it's part in it all too.  I worked part-time until 4/20/2010 and I only worked 1.5 hours that day. My j-pouch surgeries were that November and December. I didn't file for social security disability until 2 years later as I was convinced I was going to get well enough to work again.  It was approved right away and back to that April 2010 as the date of my total disability.  Not only was it approved with the first application I was given past benefits of a year as that was as far back as they can go. The net effect was I didn't receive 6 months of benefits that I could have gotten had I filed sooner.  It was a grueling process, including seeing a doctor and psychologist they hired.  

 

I don't want to accept that my disability is permanent but I need to.  I didn't want to get rid of my businesses but I had too.  I have limits that are not going to change.  My husband had surgery in October to remove his prostate because of cancer.  He got over his surgery quickly and is almost back to the way he was before his cancer was discovered.  People feel sorry for him because he had cancer but don't understand why I'm not better.  After all I didn't have cancer.  They don't comprehend the difference between a small gland and an entire colon where a 5 foot organ was removed.  A former friend of mine thought I should have recovered in 6 weeks because her sister-in-law had colon cancer and was back to work 6 weeks after the operation to remove the cancer.  Having inches or even a foot of your colon removed is easier to recover from. I am bitter at times but I'm not feeling sorry for myself and saying "why me?".  I count my blessings daily and do the best I can with the tools at my disposal.  When you are doing all that you can you can't do anymore. 

 

My 6  year old grandson asked me what my surgeries were for and I said "I had problems in my stomach area so the surgeon operated on me and I am alive".  It is far better than the alternative.  He is one of my many blessings. Another one is this fantastic support group and people like you, Sharon, Jan, Kathy, Sue, Jeane, Marianne, Scott, Laurie, Rocket, Mema, Savana, Bill and too many to name.

 

I became a nurse partly because of my journey. Also, I like the smell of chlorhexidine soap, lol. That seems silly, but I've always loved that smell!

I *hate* medical drama shows, but mostly because being on the *other* side, I can't get past them dramatizing things that would never happen in real life in a hospital. I end up yelling at the TV or throwing pillows at it!  I especially hate Grey's Anatomy. Once, they had the docs getting the ice bags ready for a fevered patient... And I just laughed and laughed at that, because things like that never happen in real life!  Or intubated patients with one measly piece of tape holding the tube and no wrist restraints and they're as cool as a cucumber. No way!  I've had maybe 5 patients in 18 years who were reliable enough to be unrestrained while on a vent!

There's absolutely nothing wrong with watching them, though, if they give YOU an outlet. ❤️

TEmarie, OMG, Im  so sorry for all you are  going through.  Its worse than a nightmare.  FIbromyalgia and Chronic Fatigue on top of  UC must be most unbearable.  I thought Jeffrey had it bad, but after reading your story an some of the others, we are not so bad off.  I really dont understand how all of you tolerate all of this.  The yoga I was thinking of is called Restorative yoga.  There are really no movements, its more meditative.  No balancing, no down dog, basically  you lay on pillows.  It is so relaxing, that sometimes, I fall asleep!  And what I love the most about yoga, any kind of  yoga, is that is all about  you. Your ability, how your body feels that day.  You what you can when you can.  I find it extremely helpful. 

I guess the only thing I can say is take one day at a time, but Im sure you already know that.  I hope that you can have more tolerable days than bad days.  It sucks, I feel for you.  My issues, while tough, all  healed.  They were able to "fix" me in a sense.  My step mother is a lot like you.  She has Lupis  and Scalederma.  Along with UC and a whole bunch of other issues that I cant  spell.  My fathers constant screaming  about how she  never feels good certainly doesn't help.  He doesn't understand why she can't be "fixed".  Unfortunately, a lot of stuff  just cant be fixed. I wish I  had some  healing words for you.  Im sorry.  Its difficult  to stay positive when everything hurts, everyday.  My thoughts  and prayers are with you!  and with everyone on this forum.  I always tell Jeffrey, as bad as it is,  it  can be worse.  And boy, each and everyone of you have it much worse than he does.  Hugs to you.

I just read over my rant above.  I'm sorry I ranted so much in your thread Sharon!  Paying for my $1,000 antibiotic yesterday upset me.  I need to get over it and hope it works!

 

Rachelraven - I know what you mean as I got a good laugh for exmple when it took them so long to even consider Crohn's on a House episode - but it added drama.  I especially love it that trials occurred so fast after the crime happens and the suspect(s) are arrested on shows like Law & Order.

 

Jeffsmom, It looks like I was singling you out and I didn't mean it to.  Jeff is lucky to have a good mother like you.  My son had health problems from birth until age 15 when he had a procedure that got rid his heart problem.  It is sad and frustrating when you have an ill child.  I appreciate you telling me that yoga type and I am going to look into it.

 

Sharon you are remarkable. I'm sorry that on top of everything else you are going through menopause.  I agree - cry when you need to while watching TV.  It's a lot cheaper than paying for a therapist!  You are strong and supportive for everyone else so give yourself a break and let the tears roll as you must need the emotional relief. Some times I feel like I can't start crying because I'm afraid I won't be able to stop.

Last edited by TE Marie
Ladies? All of u go ahead and cry. It's good for the soul. It takes some of the stress away.
And to Marie, I didn't feel like u were singlinge me out. No worries. All of u are strong people to survive what u have. It's perfectly ok to rant, scream, cry. It helps go for it!

Feeling a bit better today, thanks all.

Was at work and had a 4.5hr class following a 3.15hr one...long day.....I flung chocolate Easter eggs at anyone who could give me a correct answer today. I got a kick out of seeing them fight to answer questions for once! (doesn't take much to make me laugh!)

I was having a bit of a pity party the last 2 days...I am very competitive and am having a hard time dealing with not being able to climb stairs as exercise (it replaced running...now what am I going to replace that with?)...

Yoga? Nowhere near where I live. The only sports around here are martial arts, combat trainning or running for the bus. No gyms but lots of hills & stairs.

Jeffsmom, I am on Lyrica. Not sure if it helping or not...the day I forgot to take it and the anti-inflamatory I hurt like the dickens but it may not be related. I do some yoga at home using the big ball, a smaller one and deep breathing with stretches. It helps but I've stopped for 3 months since surgery. Trying to get back into it but every movement brings so much pain the next day.

TE, rant away...we all need it and as time goes by we have more reasons to be miserable.

Yes, those idiots who all know more or better than us deserve a cream pie in the face. 

(I am somewhat non-violent but I like the imagery)

Today I had one of my ex-favorite students stop by for a few minutes. He is 28 and an ex-soccer star... back to school for his MBA. He never needed to kick the soccer ball, just smiled at it and it rolled into the goal out of sheer joy!

Goodness gracious...who needs HRT when he is around? I was having hot flashes and it was 8 degrees out! If only I was 35yrs younger!

I tried to get my Gyn to talk about HRT but she blew me off. She's retiring and couldn't be bothered. 

I need a new Gyn, GP and dermatologist...running out of competent doctors...Still dreaming of moving but can't find the strength to list this place and start packing...just has me in tears of exhaustion at the thought of it.

Got to do it soon or I will never get it done. 

I am hoping to get a script for a thalasso therapy week...a medical week of hot water baths, massages, treatments etc to get my body into better conditon...I have never done it but know that it has helped a lot of people...and yes, detoxing from sugar and caffine could not hurt me. Maybe once I finish work.

I plan on watching a lot of tv this weekend...

Going to bed early tonight, another long day tomorrow. I start a new school with new students...I am a glutton for punishment.

Night-night all.

Thanks for all of your support.

Sharon

 

 

Sharon, where do you live that there is no Yoga?  Wow, even in VT I can find a good yoga studio.  I hope you had a good nice sleep, and happy to hear you had a good day.  Do not let a doctor blow you off!  Stand your ground.  I don't care if she is retiring or just having a bad day.  You are still paying her a fee for a service!  You got my Jersey girl attitude up with this!  I guess from dealing with so many doctors between me and my son, I don't take their crap.  Plus I worked in pharmaceuticals for 20 years and worked with a lot of MD's, Phd's and what ever else there is.  They still go pee the same way as the rest of us.

 

ok enough of my rant.  Glad you had a good day!

FYI - As Sharon is probably asleep now I'm going to answer one of your questions JMom.  Sharon lives in Paris, France! So she does everything bilingually on top of taking public transportation almost everywhere!  

 

Sharon I have a DVD from Mayo's that is watered down yoga/stretching for people with Fibromyalgia.  It helps as I tend to get lazy with out instruction. Maybe you could get a yoga or stretching DVD to add to your home gym    

Marie, not what I was expecting!  I think Giam has a restorative yoga DVDs.  I would suggest Googleing it.  It's really the lazy girls yoga!

 

Jeffsmom,

I live in a suburb of Paris, only minutes away if you are a pigeon...by car it is 15 mins, on foot 1/2hr just to get close to the city. Public transport sucks around here and is always uphill (I live in a valley). I don't drive in this country so I am limited to public transportation or hubby. He isn't often free to drive me but picks me up when I get home late at night. 

My burb had no cheese shops, fish shops or gyms(other than martial arts)...So no yoga.

It is like the massages that he is begging me to get...if I have to take the subway there and back I am not going...what would be the point?

Can anybody take HRT? (no history of breast cancer in my family and my mom took them from menopause til death)...What are the dangers? Side effects? Positive side effects?

Can you start even if you have been menopaused for a few years?

Any other suggestions? 

Thanks

Sharon

 

 

 

Since I went through menopause in stages I didn't need HRT.  I had my uterus removed and kept my ovaries for another 15 years until my colon was removed.  My ovaries had quit working, according to testing, so the only thing left they could give me was cancer I had them removed along with my colon.  It's like - how many unnecessary body parts can we get rid of, appendix and ovaries went with my colon. (Technically the appendix is art of the large intestine so would have gone anyway.  More fun to think of it is an overhaul of all abdominal.)  Plus I read somewhere that body fat produces estrogen and I had plenty of that.  I'm still down 55 pounds from before the j-pouch surgeries.

 

One of my friends is an OBGYN and she says the cancer risk is less than that of getting in a plane or car accident. I don't remember which.  It sounds like a lot of risk to me as I'm one of the unlucky ones to get cuffitis I don't accept any risk I don't have to anymore. BUT I know many that just needed to go on HRT for a short duration and not indefinitely.  Menopause causes some to have insomnia and you know the other problems. For example, instead of taking HRT a sleeping pill might be the way to go.  Uncontrollable hot flashes are not going away if you sleep better.  I have heard that OTC natural or whatever the safety claims are, HRT is difficult to manage as there is no oversight into the products strength - in the U.S.

 

I hope you get all the immediate help you can Sharon.

Last edited by TE Marie

Sharon, I'm on HRT and I'm technically not supposed to be.  I am DES exposed.  Probably never heard of it since it was used only in the States.  It was a drug my mother took to prevent miscarriages.  She had 12 before she had me.  It has caused me monumental hormone and internal problems.  I have been post menopause for 10 years now.  I went on HRT about 5 years ago.  I have have a hysterectomy and one overy removed.  My hot flashes were so bad, over 100 a day.  I sat in the Drs office and he watche me have hot flash on top of hot flash.  He told me at this point, it was a quality of life issue and we would deal with the Cancer issue later.  No before you scream, he saved my life 30 years ago when I had a rare DES Cancer that had only been scene in 25 other women world wide at my age.  I was 33.  They usually saw it in women in there 50s.  The HRT has help,so much, I can't tell you.  I still get the occasional hot flash if I eat too many carbs, sweets, or drink too much caffeine.  Eliminating that from your diet will help a lot too.  We have so much cancer on my family, I'm going to get it somewhere!  Most likely skin ��. But at least I feel better.  Another benefit is no wrinkles!  I'm going to be 60 in August, and other than a few crows feet, not a wrinkle in site!  Just need some filler, but if I would lose about 50 lbs, that will go away too! !!!  I say, if the hot flashes are killing you, go for the HRT.  Your from Paris, you eat better than we do in the States!  I'm staying on it until 3 days after I'm dead!

 

I love your attitude Jeffsmom!  I didn't realize it but you are only 3-4 months older than I am  You need HRT.  I can imagine going to the restroom 100 times a day more than 100 hot flashes!  There is no way anyone could function with those. I would be on HRT too if I had just one tenth of that many hot flashes,  Plus a few of my friends are MD's and they are on it.  

 

Quality of Life takes on a new meaning when confronted with these horrid medical problems/diseases/syndromes.  I feel like I'm more of less putting out fires and when I think I have one under control another rears it's ugly head.  When I hit 40 the warranty on my body ran out. That was the year of my first root canal and the hysterectomy - uterus only.  Then my UC diagnosis a year later. I'd had it for years but thought it was IBS...

 

So what do we do?  We do the best we can and I've learned that I need to be my own health advocate. I never thought I'd be disabled instead of working at 59.  I think Jan Dollar mentioned that she is turning 60 this year too.  Sharon is 4-5 years younger at least.

 

I'm glad you are feeling better and maybe Sharon can get some relief with HRT too.

 

 

 

Jeffsmom,

I didn't realise that you were DES too! Wow, finally someone else on this site...

I didn't find out until I was 40 because my mom denied it until then. 

I had vaginal cancer at the age of 23. Hit me like a lightening strike. I was recently divorced (!) and had planned my move to Paris after a summer here and boom. Went to see my gyn for a 9month refill script and...She asked me to come in immediately. Communication breakdown. I had had my pap smear in Sept when I had gotten home (was in stage 2) and it was Dec 23 by then. I was already in stage 4. She did the biopsy without anesthetic in her office. I was leaving for Paris the next day. She told me to cancel...I told her that I had intended to live in Paris, now I intended to die there. She gave me my file and I checked into the American hospital in Paris for a work up the following day.

A 9 yr fight, 2 experimental treatments, topical chemo, burning out the lining. 2 tumors in the cul-de-sac of Douglas, an angel of an oncologist in Toronto who followed me the whole time long distance and after a ton of pain, anguish and horrors I won. 

Never had kids of my own. Between the Des and the cancer + the k pouch I knew that the odds were against me so I married a divorced man with 2 kids.  I am a grandma 4xs now...we learn to make-do.

My last Pap smear was clean. I hold my breath each time. 

How does it effect you? They have now learned that it is passed down the generations. Most daughters of Des cannot concieve (hostile uterine formation, the egg can't implant). How did you manage? Did you have any other symptoms or side effects? 

I have multiple organ deformations, epilepsy and D'Ehler's-Danlos (heriditary disease of the connective tissue).

My mom took the Des for morning  sickness. She tried to hide her pregnancy because she was a nurse and it was against the rules back then. Or at least that is what she told me. Never wanted my dad to know because he made her swear not to take anything. 

What our parents do to us!

So can we take HRT or not? How dangerous is it for us? What are the odds of surviving menopause without it?

Thanks for all of the info

Sharon

 

OMG! Sharon, I thought I had it bad.  I also had a vaginal Cancer but fortunately it was found quickly and was in the end CIS.  Originally it was staged at a 1A.  God, the story, I have not given it much thought in 20 years!  My son is adopted.  I had been pregnant a few times but always had a miscarriage.  The last time I was pregnant, I was 29, had been doing boat loads of fertility drugs.  Got pregnant.  Was 18 weeks and the baby was 9.  Failure to thrive.  I was on bed rest for 6 weeks for nothing.  But the doctor I was seeing was an idiot.  Never told me I had cervical displasia and needed to be seen by an oncologist.  But anyway, I had what they called a missed abortion, so they had to go in and do a D&E.  I find it weird that you having Cancer at 23 that no one told you you were DES.  They can tell just by looking at your cervix.  Also during th 70's and 80's all GYN's were supposed to do a stain test.  I knew I was DES exposed since I was 16.  It should have been a no brainer for the oncologist or your GYN.  Where in the states are you from?  The other issues I have had, God, the list is endless.  Basically all of the Sid effects except the real bad Cancer that was killing girls at 17-24 or so.  It was an extremely rare cncer, I forget which one, but it is usually seen in 60 year olds!  It was ad.....carsonoma  A very dangerous one.    Do you know which Cancer it was?  Because it was only seen at this young age in DES daughters.  Thats how the whole thing got started.  there were two doctors at the University of Chicago who discovered the whole thing.  One was a Dr. Richard and I forget who the other guy was.  There are really old by now.  When I was diagnosed with my Cancer, of course everyone all over the U tied States ebates a look/see, so my slides where all over the place.  Eventually they found their way to Dr. Richard who was at Columbia Pres at that time.  Head of pathology.  He looked at them , called my doctor and the day before I was to have a hysterectomy, cancelled it!  I was 33. But my side effects, serious hormone issues, pin point cervix, tiny uterus, inconsistent periods, extremely painful periods.  I basically had all the symptoms of endometriosis but with out the adhesions.  It was so bad that I was on Tramadol and some other powerful drugs for the pain.  It was endless.  I've had hot flashes forever.  Now, is HRT safe for us, The short answer is no.  However to have the symptoms I was having, it became a quality of life issues.  We are at such a high risk for breast cancer, but I can deal with that later if I have too.  But you already having a serious GYN Cancer, I'm not sure what I would do.  Depends on how bad your hot flashes are.  Maybe you could try it for a few months just t calm them down.  I believe you and I are the same age, 60?  I'm thinking we should start a different page for you me, TE Marie, and a few of the other women, just so we can discuss this and other female or kid issues.  It's too bad they you don't have children, but having your husband's kids, I'm sure gives you the whole mom experience.  Why did you move to Paris?  I need to get back there but the Parisians are so mean!  Had more problems with the language there than any where else I've ever been!  Gotta run.  Let me know if there ism  way to send a private note, I'll give you my email.  Now that I have put my entire personal history out there, haha!

 

Jeffsmom,
I was born in the states but grew up in Toronto...no one ever spoke about Des, never, ever heard of it. My mom denied it so the doctors (mostly friends of hers) never pushed it. 
I moved here because it was my dream, I never thought that after a horrible marriage and finally getting my freedom that I would end up with vaginal cancer.
I was followed up here but they didn't talk about it either, it was only when I had met a girl who was getting a k pouch at 40 and we started to compare notes (intestinal deformation, hemi-uterus with a rudementary horn, vaginal cancer, repeat miscarriages (I had 6 in all), epilepsy, scoliosis, heart murmur etc) that we realised that we had identical sysmptoms...and she told me about Des. I confronted my mom and she finally admitted it.
I am 54 now but like you had horrid, irregular periods and ovarian cysts. They put me on progesterone for 3yrs to stop my periods in my 30's. By 40 I was having hot flashes (I took phytoesterogene, soya & yam) and they abated nicely. By 45 they were pretty much gone.
I am more interested in the HRT to conserve my ligaments, muscle mass and prevent bone loss. I heal very poorly so avoiding injury is a priority in my life. (I wouldn't mind less wrinkles too!)
You can PM me if you figure it out and I will send you my email...Yes, we sort of need a special menopausal section in this site!
I'll wait for your PM
Sharon
 

Thanks, Sharon, I was hoping you could figure it out!!!! I'lol look around. I'm remember someone asking about it a few weeks ago.  As far as HRT, go for it!  In Europe they are much more progressive than here in the states.  Oh, BY THE WAY! I've had open heart surgery for mitral valve prolapse !  Someone asked me if that was DES related.  In my case, I know it's family related.  My aunt died at 43 from the same thing .

 

ill figure out the private message thing!  Go to bed, it must be late.

 

dianne

If you want to start a private message thread, just click on the screen name of the person you want to invite. That will bring up their profile. On the right is a list. Click on Start Dialog. That will bring up a post window similar to replying to a public thread. 

 

If you have email notifications checked in your own profile, you will get an email when someone starts a dialog with you. If not, you will at least see the alert in the upper right when you login.

 

Jan

I'll post the info in your other thread too, so other members that aren't looking at this thread can see it too.

 

Jan

It really are the little things in life that make such a huge difference, hmmm? Like figuring out a "simple" computer task!

 

Jan

Mmmm, I can so relate, Sharon. I'm sorry. I don't think I have PTSD anymore, but I definitely did have it full-blown for a while: nightmares, shakes, extreme anxiety, constant fatigue, couldn't function at all. Higher than average levels of depression and anxiety are still with me; some days are better than others.

 

I'm currently doing a thorough search for my magic wand, which has been missing for entirely too long. As soon as I find it, I'll let you know so you can borrow it for a while. 

 

Gin

Yes Jan, sometimes 1 little miracle can make you whole day!

Gin,

I have been searching for mine for ages...seems that it has gone missing along with my strength, energy, enthusiasm (not really but...) and ability to get-up-and-go...it has gotten-up-and-went leaving me behind.

The good news is that the pain on the left side where he fixed the blockage is almost gone...the rest is still there...

So why can't we grow younger instead of older? Stronger instead of weaker?

Having problems with this 'living with your limitations' business...I don't like my limitations, I like strength, energy and peps...

Instead I have poops!

Hugs

Sharon

I am experiencing increased anxiety.  I discussed it during my appointment with my PC & favorite doctor.   She thinks it sounds like I might need another dilation  I am fortunate to have an Internist that is knowledgeable about IBD and specifically j-pouches.  We agreed that I need to see how the new $1,056 antibiotic works.  Maybe it's the one that is finally going to beat down this pouchitis. I'll quit worrying about the cost then. I'm continuing to eat a mostly soft food diet with my main meals being several protein fruit/veggie smoothies daily. She said I need to get back to eating solid food. I'm not craving much as I get nauseous and partially blocked if I eat too heavy. I can't seem to chew up the food enough. It's too soon to expect another dilation. I think the problem is too far up in my pouch to dilate myself...... 

 

She's referring me to an endocrinologist as she thinks I might have Hashimoto's disease.  My hypothyroidism is again uncontrollable for no apparent reason.  It took 18 months to get the medication dosage evened out after my surgeries. After looking it up I don't see how getting that diagnosis is going to help. The treatment is almost the same as for hypothyroidism.  As she said it's all autoimmune.  All the symptoms seem to be the same as my fibromyalgia, chronic fatigue and migraines. Another label I don't need, I need for something to be flipping cured...

 

My get up and go has gone away too Sharon. It's difficult to keep our hopes up sometimes but what else can we do?  Just think of all the students you are helping to shape.  They are lucky to have such a good role model.  We have our families, friends and many other aspects of our lives to be thankful for. It helps when we remember all that we have. When the clouds seem to be taking over my thoughts I count my blessings.

You are so right...

I am greatful for my hubby...Especially right now. He crawls out of the house in all weather and drives over to pick me up nightly...not sure how or what I would do without him...probably crawl home on all 4's.

He's gotten very kissy/cuddly too...Very new to him...been covering me with love, affection and understanding...this is a new phase in our life. I needed this a lot. I had had some vicious PTSD a few years back (around the time when each and every surgery led to 3 more and no one could wrap their head around how to fix me) and felt brittle, fragile and breakable (felt like I was made of very thing glass and the lightest touch would shatter me)...hubby was not very understanding and I was blowing up or breaking down for the slightest thing (granted that is also when menopause hit!). 

I thought that my life & marriage were over along with my health.

I am greatful that we survived it intact and capable of still loving each other...it was no easy feat.

I am a bit worse for the wear and so is he but we get these moments where we both are able to fall into each others arm in giggles...and that goes a very long way to healing ourselves.

Like I said, I take my miracle where I can get them.

I understand the only drinking protein shakes and being scared to eat solids but you need some animal proteins too...maybe ground beef pies? Homemade? Or cottage pie (nice warm mashed potatoes and ground beef. Not too hard on the guts and easy on the pouch?

I think that we need a girls' movie night. Let's all plan on watching the same one and having a good laugh.

Sharon

 

Hi Sharon, I'm back.  I have been catching up with all the posts.  I'm so sorry Marie that things are going so badly for you.  It terrible what so many of you are dealing with.  I can't begin to imagine what you all are going through.  I'm looking for my magic wand too!  I'm going to Disneyworld in Florida in May, maybe I left it there The last time we were there!  

 

Im curious, how do these issues start, like the pouchitis, and all that other stuff?  Oh crap, another problem with Jeff.  I've gotta run and fix it.

Sounds like you are pretty frazzled Jeffsmom,

I read in the general section that he has a sort of seroma under the suture line...they weep  a lot and can cause the flange to unglue so you may need some sort of secondary product to hold the flange on like a tape or tie (there is something called a Montgomery tie) that can hold everything on while he heals up. No squeezing, it can push the seroma in deeper or make it travel down the scar and open it up more.

Hands off (I know that it is hard to get him to listen).

Just keep changing the gauze on it regularly and monitor the colour or if he gets headaches, chills or fever...those were always my triggers that something nasty was up.

My nurse would shoot some saline into the opening to rince it out (one nurse used betadine then saline to keep it all clear of infection and clean) but you may not need to do that if it is a small seroma. Just avoid any weight or pressure on his abdomen.

Keep the diet gasfree and light and have him empty the bag often to keep it from filling and getting to heavy for the already unstable flange.

Then put him to bed and get yourself a tea and a good book or put on some music and rest...

Sharon

Ps..I am doing better but still frustrated.

Had a wedding Sunday night, got dressed up, ate light beforehand (homemade veggie soup put through the blender)...well obviously it was not light enough because I spent half the evening in the bathroom trying to empty out an uncooperative pouch. like the contents had turned to concrete inside it. 

Evening gown, pantyhose, spanks slip...high heels. Not a good mix with a cranky pouch and a tiny bathroom stall with dozens of ladies running in and out...needless to say that I was not a happy camper by the end of the evening. Couldn't eat or dance...missed the sweet table completely...Grrrr

Are we having fun yet?

hugs

 

 

What a bummer Sharon!!! I could envision you - as you are such a good writer plus it took me back to my daughter's wedding reception.  It was 7 years before I needed the colon removal and j-pouch surgeries - JUST UC.  By the end of the reception I was no longer wearing my panty hose and eventually went home, changed into jeans and went back to help with the reception winding down.  The wedding party and guests were still dancing! I don't recommend wearing spanks that include your bra and snap at the bottom of your crotch.  Not with anything active like UC, Crohn's or j/s/- pouches.  It doesn't even seem possible for those with ostomies or k like pouches wo wear spanks at all!

Sharon, it sounds like you are feeling a tiny bit better, I hope so!  I'm always frazzled !  life with Jeffrey keeps me hopping, there is always a crisis.  Mostly it's his autism that gets in the way.  Right now that seroma is pissing him off.  And he is going through a bit of withdrawal right now too.  He has been on the narcotics almost an entire year.  It's time to come off.  You said to watch out for chills, fever and headach, well other than the fever, he has  a headache and hot and colds sweats, so it's difficult to know what it is from.  We are going to our primary doctor tomorrow, so I'll let her figure it out.  I think it's the withdrawal more than anything.  But the output is a lot slower than over the weekend.  But he knot ices every little drop and it wigs him out.  So that's what keeps me jumping.  Thank God, I'm going to Florida on the 15th of April!  I get 2 weeks of peace and quiet with no one calling my name.  Then on May 7th my husband and Jeff are flying to Orlando and the three of us are going to Disneyworld, yay.  I figured it has been such a mIsserable year, why not go to the happiest place on earth!  Then they leave and I go back to Delray Beach for 3 weeks.  I can't wait.  The weather here has been horrible.  We are getting snow again, and tomorrow is April 1st.  I'm usually in Florida by this time, so I normally would not have to deal with this cold and crappy weather.  At least it's something to look forward to.  

 

I hope all is better with you.  Hi Marie, hope all is well with you too.

 

dianne

Dianne,

How did it go with the doctor? What did he say about the seroma?

How is Jeff doing today and is he going through DDTs? 

It is pretty rough to have to come off of narcotics while going through post op.

Find out if there are any homopathic remedies out there that can help him get over the lumps and humps.

When coming off of that stuff he is going to go through sleeplessness, hotflashes, sweats, irritability, joint pain and a ton of other symptoms...

Plant based remedies can really help...I've added a link with the list of stuff that he can use. Hope it helps.

Sharon

http://homeopathyplus.com.au/a...tamed-by-homeopathy/

 

Hi Sharon.  Hope you are doing well.  Busy day around here.  Getting ready for Easter, but cooking up a storm.  Jeff's doctors apt with our primary went well. Meh has been having a little bit of withdrawl because he is not taking as much of the drugs because he hasn't needed them.  But she gave him a patch with anti-anixity medication, and a few other things.  No DT's, must likely won't have them because of the anixity medication she put him on.  I'll check out the plant based suggestions you gave me, thank you.  Next week we go back to the surgeon.  The only issue we have right now is the hole in his incession that is oozing yucky stuff.  I forget what it's called.  It doesn't hurt, but it is annoying.  Oh, looks like we are going out to Cleveland in June.  I spoke to Dr. Dietz's office today and he wants to do exploratory surgery and try and look at the pouch.  They felt the reports I sent them were not enough information and he wants to look for himself.  Second opinion stuff I guess.  I can't believe what the airfare is!  I can go to Phoenix For less!  It's over $400 per person.  So I think we are going to drive ;(.  I'm so lazy!  I dont want the mileage on my car. But the train is more expensive than to fly!  So I guess it's an 8 hour drive.  I have so little time too.  I have a small dog sitting business and I am totally booked from June 18 to September 30.  The entire summer.  Some of my clients booked me a year ago, so it's not so easy to rearrange anyone.  But, I'll figure it out.  I just hope we don't have to be out there too long.  And hopefully, the fistulia will have begun to close and the micro tear will be healing.  That would be such good news.  Ok, Im falling asleep as I'm doing this, so I'll catch up with you tomorow.  Be well, 

dianne

If you want to drive, but don't want the wear and tear on your car, how about renting a car for the trip? We do that sometimes and it can be nice driving a new car.

 

Jan

Just did my 3 days of obligatory cooking (loads of Easter lamb) with salads, sides and all sorts of desserts...yum.

I was so exhauted that I blew up on hubby on Sat...just couldn't stand and cook a minute longer.

My pouch is in a slow period. I don't know if it is/was the all of the probiotics that I took for 6 months but it is practically at a full stop.

I used to empty from 8-12xs/day or more (before and after every meal + 2xs in the morning before leaving for work & at night before bed)...my turn around time for digestion was less than 1/2hr for fruit in the mornings...now I am lucky if it comes through 12hrs later. 

I am 90% off of carbs so it doesn't make sense except that the probiotics have put pay to whatever was irritating my system. 

Not sure if I had low grade pouchitis or just some bacterial overload but I miss my fast digestion somewhat. 

Now I don't even feel my pouch (litterally) when it fills. No gas and bloating, no 'I am full, Please empty me' message...so I am litteraly forgetting to empty!!!! That has never happened to me before while I was on solid foods! Not as if I have never taken probiotics before.

Strange...

Have a happy Easter all...Don't eat too much

Sharon

Sharon, I did the same thing!  Cook, cook, cook.  Thursday I made potato pancakes, Friday I made piergi, Sat I made dessert.  Ham was cooked today.  I'm sick of looking at food!  Thankfully the pierogi is gone!  That is my most favorite food in the whole world. If someone asked me what I wante for my last meal, that would be it, but I'd have to make them. Won't eat them if anyone else makes them!  Happy you are feeling somewhat better.  Jeff is doing okay too.  Nervous about going to Cleveland in June.  I'm not thinking about it.  Can't wait to get out of here.  So looking forward to Florida next week.  

 

Hope me you had a wonderful,Easter Celebration!

 

diannne

What do you stuff them with???? I used to stuff mine with sautéed onions and potatoes...yum! (definetly not k pouch friendly!) But I made 'Banatage' a local specialty made with cooked potatoes, either canned tuna or sautéed ground meat, onions, fresh parsley, cilatro, eggs...very j pouch friendly.

You mix them all together with spices, form elongated meatballs then dip them in egg and breadcrumbs and fry them up...

Eaten with a green salad my pouch is happy.

Avoid too much chocolate this weekend...How does Jeff do with chocolate? Some say that dark chocolate contains huge quantites of magnesium and thus has a calming effect on the nerves...hmmm, not a bad idea???

Will take a well deserved nap. 

See you in Fla in June or July?

Sharon

 

I stuff mine with potato and cheese.  Then boil them and then fry them in butter and onions and cracker meal.  Not belly friendly, or weight friendly, but I love them.  I can't believe how much Jeffrey ate!  since he is back on the ostomy, he has been eating quite a bit.  As far as choclate, I don't keep it in the house.  I am not a bit choclate person and Jeffrey will eat until it's gone.  When he was 300 pounds, he was really a compulsive eater and the tendency is still there. So I try to keep all junk food out of the house.  Now though he is finding that some of the junk in the quantities he eats is not agreeing with him.

 

are you coming to Florida in June?  I will be back in NJ by then.  I'll be home by the end of May because my Oisin is coming in from AZ and I haven't seen her since November. She is my best friend and of course favorite cousin.  Is id like to see her while she is back east.  If you ever come to NYC, I'll meet you in town!

 

dianne

 

I really understand the compulsive eating...If I have something in the house I usually eat it until it is gone (especially ice cream, chocolate, nuts...) or until I am folded in 2 in pain. 

Cramps don't stop me. 

So I buy less and less and try not to be tempted (a losing battle). 

My pouch hates fat. On the outside of it...if I gain too much weight I put it on on the belly and that is very bad for me and my stoma so I am forced to be careful.

When working I stick to yoghurt, apple sauce, some nuts, raisin, bits of cheese and a banana or peeled apple. 

When I am very good I only eat salads or soup at night. No perogis, no banatage or fried foods. I am being very bad right now!

I summer in Fla and try to get my health back but will not exclude a trip to N.Y. one of these years.  Who knows, maybe we will organize a poucher's jamboree!

Enjoy the end of the holiday

Sharon

skn69 posted:

This is hard for me to admit but I am still suffering from some sort of PTSD.

Hubby says that I am obsessed with medical programs (Grey's Anatomy, Dr House, all medical documentaries...) and that I only feel happy or comfortable or at ease in a medical environment. 

He isn't wrong. 

My dad watched WWll documentaries his whole life to the point of obsession...When I asked him why he said that he was 'looking for himself'. 

I don't think that he was actually looking to see himself as a kid in a concentration camp but looking for his childhood, something familiar...the life that he was living did not resemble what he understood as a kid.

That is how I feel. My life does not jibe with my childhood. I grew up in hospitals. That is where I feel...safe. 

My mom was a nurse. I helped her study for her exams when she had to have her diplomas re-validated. I read Grey's Anatomy and the Merric manuel from end to end. That is what I understand. Not the hobbit. 

Hubby can no longer stand my Dr House marathons etc so I stay up late to watch them when he goes to bed. 

Am I the only one? I feel like no one can understand me unless they have lived through what I have. And no one here has so I feel lost and lonely.

Is this PTSD?

Sharon  

Wow that makes me feel like I'm not crazy and alone in that feeling. I feel so at ease, almost excited when I need to get any type of medical treatment, IV's, surgeries, doctor appointments. The reason that I've come to is that when I was going through all the emergency surgeries and traumas at 16-21 I think my mind tricked itself separating the normal scared feelings, into thinking that this fun, this is normal. I don't tell anyone but I like having procedures done now. Also I haven't felt real emotions since then, no happiness, no contentment, do not feel anything when I see a baby cry, Really nothing. I think my mind turned it all off to be able to survive through the trauma.

Crystal, 

I understand. There is a huge difference between getting sick as an adult after a life of normally good health (shock, pain, suffering, denial...) and having grown up sick and in a hospital.

Does it make us a funny sort of egocentric where our lives are centered around ourselves and our illnesses.? Maybe.

Is it that we are used to every single adult asking us about our health, intake, output, digestion,  sleep...the list just goes on...so we are not comfortable when it is not 'about us and our disease'? 

I don't know...not sure if there is a rule or not...But yes, we are very special.

There was a big scandal about 'nepotism' here (the hiring and promoting of close family members in a business or government)...everyone seemed shocked by it but me. 

I found it somewhat normal.  You understand better than others what you know or experienced as a child, at the dinner table listening to parents speaking, going into work with them etc.

If your parents had a printer's shop, printing press etc and you grew up hanging around it then it would be most natural for you to either want to 'carry on the family business' or go into something similar...like literature or book editing. It is what you know and therefore you have an advanced understanding compared to someone who 'just decided to get into it'.

As a patient, who grew up in a hospital, 'it is what you know'...what you understand...your references. BP, I.V., anesthesia, surgery...none of these things scare you because you understand them and have lived through them...they make sense to you where the rest of the world may not. 

I feel scared and uncomfortable in a nightclub, do not do well in a huge stadium for a game or a concert or camping...I need my comfort zone...bathrooms close by with running water, toilets with clean seats, proximity to a hospital etc.

I do not get the jokes that a lot of people make or laugh at the 'stupid ones' when they use toilet humor...

That makes me different and often an outcast...but I am also the more sensitive one who people call in an emergency, who sees the 'signs' before the stroke or heart attack happen because I know what to look for...over sensitive or just 'used to it'?

So, do not feel bad about feeling more at ease in a hospital than a ballroom...But...And this is a big but...not feeling any emotions whatsoever is not a good thing...you may have had to turn them off in order to deal with what life was throwing at you...or buried them deep to face life but hopefully they are somewhere down there...hiding and waiting to thaw out.

Friends who can understand, talk therapy, group therapy or just a good friend can often help you get past the 'numbness' and into the flow of 'normal' (whatever that means).

In the meantime...I watch Grey's reruns, Dr House and Bones...

Sharon

 

 

I often have said to my husband that he is my hero as are all of 'guys' here on this forum.  All I can say is cyberhugs to you!! 

Funny, but as a reread the above posts I find myself in exactly the same position as when I wrote mine...Cooking like a fiend for Easter...

So, Happy Easter to one and all, Happy Passover for those who crunch and Happy Spring to all the rest...

Sharon

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