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

Last edited by CTBarrister

Hi Guys,

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

Jenjen,

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

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

CT...yup! 100%

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

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

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

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

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

Sharon

 

 

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

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

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

Jan

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

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

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

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

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

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

Life shall continue

Sharon

Sharon,

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

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

Thank you gutless,

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

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

Will call tomorrow and beg for an appt...

And the beat goes on...

Sharon

 

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

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

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

 

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

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

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

 

Thanks Angie,

You are great...And couragous.

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

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

 

 

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

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

 

Thanks Angie, 

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

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

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

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

Off I go again...

Sharon

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

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

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

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

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

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

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

Please forgive me so whining like this.

Frances

 

 

 

 

 

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

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

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

Jan

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

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

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

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

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

Thank you for the advise

Frances

 

 

 

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

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

Jan

Hi Frances, 

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

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

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

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

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

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

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

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

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

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

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

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

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

Sharon

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

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

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

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

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

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

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

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

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

Thank You

Frances

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

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

Jan

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

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

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

CeCe

 

 

 

 

 

CeeCeeee (how many 'e's?)

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

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

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

Frances...

I feel your pain. Oh, so much.

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

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

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

I have missed out on so much.

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

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

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

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

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

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

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

Sharon

Jan, 

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

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

Sharon

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

Jan

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

Angie, 

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

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

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

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

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

Sharon

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

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

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

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

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

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

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

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

When enough whining from this lady today.

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

Frances

 

 

 

 

 

 

 

 

 

 

 

  

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

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

Nothing is worse than dealing with an insurance!

Jan

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

So I will wait.

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

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

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

Im tired really tired

Frances

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

 

 

 

 

Yes, invisible diseases are not easy to explain.

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

It is exhausting dealing with all these bureaucracies!

Jan

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

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

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

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

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

Frances

 

 

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

Hi Branchy,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do not give up.

Sharon

 

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

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

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

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

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

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

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

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

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

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

(Be there for others but leave yourself behind)

I care

Frances

 

 

 

Yes, Branchy, we do understand.

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

Jan

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