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

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

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

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

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

Definitely feeling like a second class citizen.

Peace to all

Frances

 

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

Best wishes to you all.

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

 

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

Jan

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

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

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

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

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

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

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

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

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

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

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

Frances

 

 

 

 

 

 

 

 

 

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

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

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

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

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

Huge hugs

Sharon 

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

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

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

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

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

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

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

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

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

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

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

I hope you all have a great day.

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

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

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

Jan

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

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

I wanted to wish everyone a HAPPY MOTHERS DAY.

Peace and happiness to all of you fabulous people.

Frances

Hi Frances,

Happy mothet's day to you too.

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

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

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

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

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

The change in temperature will give you more energy.

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

Sharon 

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

I am so sorry Angie 

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

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

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

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

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

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

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

Why can't we get a break?

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

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

Sharon 

Lambiepie posted:

I'm gonna throw out one more thing (I'm so efficient -- when it's someone else and not me. I tend to freeze and panic when I need to help myself!) When your body's inflamed, one way to treat it is to take anti- inflammatory meds.  Another is to try to prevent inflammation. I was just reading an article on cardiac issues and cholesterol as they relate. It said that LDL, the bad cholesterol, actually creates inflammation in the body (the arteries.) Something to do with oxidation of cells, hence the importance of eating anti-oxidizing foods like salmon, avocado, olive oil, etc....good fats. Also to reduce inflammation, going to your chiropractor is a great idea. Maybe massage? Dark chocolate, coffee, anti-oxidant supplements. I know you were hesitant to take your meds so I'm thinking from another angle. Actually, when I read that you took them, I thought"Good for you!" and especially that you got relief. My husband's good like that. When I stare at a pill and hesitate, he says, "Go ahead, com'n, just take it. It'll be good!" I'm sure he was the life of the party when he was younger! 

Hello everyone,

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

I hope this helps.

M

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

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

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

 

 

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

M

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

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

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

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

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

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

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

Sharon

 

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

Thanks Angie,

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

I think that the biggest problem is expectations.

I should really post this subject separately...

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

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

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

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

So back to the Ethiopath and chiropractor...

Sharon

Keep fighting the good fight

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

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

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

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

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

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

Frances

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

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

Frances,

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

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

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

Angie,

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

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

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

I will keep fighting the good fight...

Sharon

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

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

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

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

Have a nice Sunday

Frances

 

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

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

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

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

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

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

Thanks for listening

Frances

 

 

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

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

Frances

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

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

Jan

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

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

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

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

Keep fighting the good fight!

Sharon

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sharon

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

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

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

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

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

Unfair. Untrue.

Sharon

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

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