HealingWell
Search Close Search
☰

I'm scared - got endo report

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/19/2009 10:52 PM (GMT 0)
PaLady -
I looked at Dani's recipe again and I don't see anything to worry about. Maybe the pecans if nuts bother your stomach. I am thinking about cooking a batch up. Thanks Dani, it sounds good.
As far as Prilosec goes, I never got any relief from that. I had switched to Prevecid early on doe to the Prilosec not helping at all. They have a capsule and a solutab in Prevecid. I had to start using the solutab because of insurance and I think it works faster than the capsules. I am on Aciphex now until I go for my follow up Tuesday. Since my stomach had holes that leaked from surgery he wanted me on it as a precaution. I can't say if it is helping or not because I haven't been having any heartburn or anything since the surgery anyhow. My son does think it works very good and a few friends use it and say it works well. I would say it is a 50/50 shot of Prilosec working for you. It didn't for me or my son, but does for my wife. I think I did feel worse with it than without also. It was so long ago I can't remember for sure, but I do know it didn't help me at all.
I hope you can get some rest and enjoy your weekend.
Take care,
Bill
Posted 6/20/2009 12:07 AM (GMT 0)
PAlady you are so LOVED look at all the posts..........

((((((((((((HUGS)))))))))))

Laurie
Posted 6/20/2009 12:25 AM (GMT 0)
     Dear PAlady,

 

   Dani- I do have to ask about that recipe. Is that an ok thing for someone with my problems? 
     You know I dont know. Im afraid im rather.. whats word? Nieve? Or dont know much? about medical type stuff conditions  blush   So if I ever post anything offensive or out of place let me know! Im a babble head sometimes. I try to ask questions often, but I hate to be a pest. I got that recipe from my mother in law, she is diabetic... but allows herself a lil lee-way when visiting out here and she & girls are always cooking up mischif and sugar treats.  She calls it "Divinity". wink

 

*huggs*

dani

Posted 6/20/2009 1:44 AM (GMT 0)
Hi Palady,

Just wanted to see how you are doing today! I've been thinking about you! I hope you are feeling a little better - in every way! (((((((((((((Palady))))))))))))). You are going to get through this. You are so strong. I know you can do it; you will find a way to do it! Don't give up hope yet! And again, if there is anything that we can do to help, don't hesitate to let us know! I just feel so helpless & want desperately to help you, make you feel better, and at least give you a big hug!

hugs,
Skeye
Posted 6/20/2009 4:06 AM (GMT 0)
Skeye - I wish I could convey just how much your words DO help, but hopefully you know what it feels like at time when you've needed it. I hope all of you feel the same way. So don't feel helpless. This is like a balm....so soothing and comforting!

Dani - In no way were you naive or offensive. I'm pretty ignorant about all this, too, but Bill already gave the recipe a thumb's up, and I sure could use some Divinity!!!! So thank you. And Bill, thank you for the info. It's enormously helpful and such a relief to hear from someone who's been there. The GERD forum is in my future, just not yet, so you're being a terrific representative. I have popped over there and read a few posts, and that's helpful.

And Laurie, you know I really do feel the love. That's what's so moving about this place. And I hope each of you feel it, too. It's kind of like one big love boat!

I talked with my cousin (the pharmacist) tonight. She is amazing. She is struggling herself but offered to continue to help pay for some kind of health insurance, even a minimal policy. Since none of them cover prescriptions, when she gets some time (she worked late and had just got home) she'll help me search for pharmaceutical companies that offer meds I need at low or no cost. I hate to lean any more on her. She has paid for my COBRA coverage for a year now, and that was nearly $400/month. That is a lot of money. And she knows I can't pay her back, at least not unless I sell my house. But as soon as I'm done with these next 10 days of medica care I'm going to look into more of the fine print on some of the cheaper policies. I don't want her paying for what amounts to no real coverage.

You know it's so odd, isn't it, the people who step forward when we're in need....and the ones who don't. That's a topic for another thread.

I wish you all sweet dreams.

PaLady
Posted 6/20/2009 4:44 AM (GMT 0)
PAlady, its good to hear the hope in your post. It is amazing at who sticks with you through tough times and who is not around. I know that there are still many issues that have to be faced but one at a time is good. How do you eat an elephant? One bite at a time. Have  a blessed weekend.
Posted 6/20/2009 6:00 AM (GMT 0)
 

 

   PAlady,

 

     "You know it's so odd, isn't it, the people who step forward when we're in need....and the ones who don't. That's a topic for another thread."

 

     Oh! I hate that part I really do. Not that we would ever in a million years think of giving with the intent to recieve. But oh my gosh darned goodness! Would it hurt to call? Smoke signals? ANYTHING?  ...  smhair

*huggs*

dani

Posted 6/20/2009 6:09 AM (GMT 0)
PaLady----->sending smoke signals back to Dani smhair smhair smhair

Fatherjohn - what if you don't like elephants? smilewinkgrin

Hugs,

PaLady
Posted 6/20/2009 7:23 AM (GMT 0)
You made me laugh PAlady, I guess you won't know unless you try!!!
Posted 6/20/2009 10:01 AM (GMT 0)

I love laughter.   I really do believe it changes our aura's and eases some of our discomforts.  Ok I know I'm showing my mystical side..lol

Laurie

Posted 6/20/2009 7:23 PM (GMT 0)

Oh PA!!! 1st> Sorry I haven't been around lately! I couldn't believe I missed a day on my PC and log in and see your post. TWO PAGES already! You are a special PALady and loved by sooooo many!!!!!! I'm so sorry about your test results, it always sucks when something scarry like that is dumped in our lap! I know that you are upset but reading through the posts, it seems like you have accepted the facts and will take the action that is needed. No more M&M's, OK? But there must be something that you love that you can replace them with that you will really enjoy and is allowed in your "new diet"??? How about a milkshake? I've had stomac problems ever since High School when I developed ulcers along with my Dad's cancer sentence. I've taken every cure they have come out with since the late 60's and followed the evelution of tummy meds ever since. They sure have come a long way!! I now take Prilosec or generic equal since it became OTC. I used to take the purple pill and before that the one which had the commercial w/ a big pink stomac, forget the name.  I think as long as you are not lactose insensitive, milkshakes would be OK although as you know they are fattening as H**l!! Maybe there is something else, some latenight comfort snacks we can find for you??? You know, it's crappy that you have this thing but what if it had progressed to the next stage w/o you knowing it> Look at the bright side, you caught it early, right??? I'm sooooooooooooooo glad they did!!! So you hang in there old friend!! I'll try to post more often but have been really wrapped up w/ all my retirement working and settling in stuff! I'm south again today, came down yesterday to cut the lawn, get the mail and bring some essentals back up w/ me. I was going to go back early this morning but didn't finish everything in this dredful heat and ended up overdoing it w/ my chest high lawn weeds in my back yard yesterday! OUCH!!! My neck is hurting again along w/ my old friends> knees, hip and my oldest friend> lower back!! I was just out there and did a little more but it's 98 outside w/ 90% humidity> KILLER!! So just a little at a time! Hopefully when I get a little more settled in up there in paradise, I will be able to post more!! I miss yuze gize!!!

Much Love and lots of Big Big HUGZ!!!!

Pete

Posted 6/20/2009 8:09 PM (GMT 0)
Awe, thanks, Pete, for taking the time to post! It really means a lot to me!

I've missed you, but I am glad you're taking the steps you have with retirement - but take it easy on the yard work!

I'm feeling that hug now!

Hugs back to you!

PaLady
Posted 6/21/2009 12:51 PM (GMT 0)
Hi PA Lady,
Remember when I mentioned that there are some insurances being advertised on tv these days that an individual can purchase for themselves? Well, I just came across one of them again, and it's web address is www.CinergyHealth.com. For a single individual in Pennslyvania the cost would be around 241.00 and there is some prescription coverage included as well. I don't know if this is something that might help tide you over as far as coverage goes , but it might be something to at least take a look at. If I can find any of the others that I have also seen, I will let you know.
Sandi
Posted 6/21/2009 7:26 PM (GMT 0)
Sandi,
That was so GREAt of you to find that. I will definitely check it out. Even the adult basic program in PA is $330/month while you're on the waiting list (but $35/month thereafter- waiting list 1-2 years long!) but still not Rx coverage. However the bummer is you can't get on the waiting list for adult basic if you have any other insurance program!!! As a matter of fact, you have to be without any insurance for 90 days, unless you're unemployed. I think I'd meet that criteria, but is this system crazy or what?

I am really getting more nervous especially about the lack of Rx coverage, because I'm wondering if the Prilosec is working. Sometimes I feel even more heartburn. I know there are a couple of other meds, nexium being one, and Bill has mentioned others, but the anxiety I'm feeling sure doesn't help my stomach acids to calm that's for sure. This is the worst time imaginable to go without prescrition drug coverage, although believe me I will search and my pharmacist cousin will help. But just the anxiety of having to look so hard, and wonder and worry...it's crazy.

I did more reading last night on respectable sites and honestly, this is a little worst than I wanted to think. The condition of Barrett's with mild dysplasia is considered "premalignent". The only good thing is, as Pete said, having caught it early. Webmd had some extensive info. on Barrett's supplied by the Cleveland Clinic. They did say that most cases of esophageal cancer are caught after cancer symptoms develop, so they are worse, and so I guess it's lucky I did th endo and now can be in what's called "surveyllance" mode. Endo every 6 months. I know I've got to jump over to the GERD forum to ask a med. question, but it's odd that all of a sudden CP is being put on the backburner. Not that I don't feel it, that's for sure, but I have to do all I can now to reverse these cell changes. I confess I'm still in a state of shock, though, and priority 1 is still getting all the meds and appointments I can get in before June 30.

I see my PCP tomorrow. Haven't seen her in a couple of years, as she was the one who screwed me over with W.C. There's no time to go PCP shopping right now, and I've see her nurse practitioner in the meantime, but I thought I'd better see her just in case she gets pulled in on the disability or anything else. I am hoping to gently make her feel a little guilty about how she wronged me, but I'm not going to focus on that. No time for that now. But her husband, I think, is a drug rep, and maybe she's got connections to get some samples.

Oh, I'm sorry I'm going on, folks. It's a scary day.

I just thought, Sandi, I'll bet there's a pre-existing exclusion on that policy. Maybe not, but most of them in PA have them. I did find out if I stay with BC/BS that they wouldn't be able to exclude preexisting conditions because I'd been with them.

Hugs to all. Sorry for rambling!

PaLady
Posted 6/22/2009 12:30 AM (GMT 0)
PA Lady,
No, there is no pre-existing exclusion clause on that policy from cinergy. That's why it stuck out in my mind, was because in the advertising for it, it specifically says that.
Sandi
Posted 6/22/2009 2:23 AM (GMT 0)
PA-
I think as long as you have had continuous coverage for the past 12 months, insurance companies are not supposed to be able to exclude pre-existing conditions. I've looked into this a lot since I am in the same boat as you are (albeit a few months behind). I'm not 100% positive that it is a federal law, but I'm pretty sure it is. I used to work for an insurance company, so I think their information would be pretty reliable. Maybe your congressmen's offices can say for sure what the situation is in PA, but I thought I would pass that along to you in case somehow it changes anything or helps in any way.

I'm pretty sure you've mentioned the site before, but in case you haven't, I've been looking at the site: pparx.org. It is not great for pain meds, but there are a few programs in my area listed on that site that cover medical expenses & prescriptions (mostly generics, but there are several name brand drugs that are covered when there isn't a generic equivalent). They are specifically for unemployed individuals & were very, very low cost. You had to be ineligible for any other coverage, but they averaged between $20-40/month depending on coverage. It may not be a perfect solution, but I'm considering it if I can't find a job soon b/c at least it would count as "continuous coverage" to allow my CP & thyroid issues to be covered once I land a job. For the short term, it would cover my Lyrica, my thyroid & anemia meds, and an occasional prescription for sleeping pills. All of my PCP visits would be covered & my neuro visits. My PM visits would be covered if it is just an office visit to get scripts or such, but not for injections. It's not ideal, but I thought I would share my own experience with you in hopes that it might help or spark some other ideas for you. I know I have really benefited a lot from all your wisdom.

blessings,
frances
Posted 6/22/2009 2:32 AM (GMT 0)
Thanks Sandi & Francs!

I can't tell you how much I appreciate it. Sandi- I will look into that insurance.
Frances - I think there's something about that if you continue with the same insurance company. BC/BS had that preexisting note in their brochures for the lower end policis with an asterisk that in some plans that may not apply. When I called they said if I was eligible for a "conversion" policy through BC/BS, then the pre-existing exclusion wouldn't apply. So it might have something to do with that. And they said I'd have to elect one of those plans within 90 days. After that, the exemption on preexisting conditions no longer applies.

You''d think this could be a little easier, right? Well, actually, it could be if people put their minds to it. Hopefully, politicians of both parties are starting to get the message, but I still fear the big lobbyists. I'm going to make sure I've put my two cents in on this one, and then some!

If they'd only let us put the plan together....

PaLady
Posted 6/22/2009 3:01 AM (GMT 0)
I agree that it'd be nice if we could write our own plan. :)

I'm really pretty sure that it's a national law. I know for sure that it is the case in Illinois ever since Clinton was in office that if you had a condition, but you were covered for it under your prior plan for the past 12 months, they couldn't exclude that condition. There are a few exceptions (short-term policies, for example) but at least based on past experience (& a lot of training sessions at my former employer), there are very few loopholes that allow an insurer to exclude pre-existing conditions for a person who's had continuous coverage.

It works better when you are joining a new group plan. The trouble with individual policies is that they can offer you a policy but effectively exclude you by charging the individual 5x their normal rate for monthly premiums. Two of the four charity insurance plans that I looked into were group plans, though, so the rate was negotiated ahead of time & was not based on the health of any one person, which was why it was so much cheaper for me to go that route rather than try to get insurance as an individual. Any member of their plan was eligible to have all covered expenses paid, regardless of prior conditions. Like I said before, there were some expenses that they just don't cover for anybody, but the way I figure it (at least in my case), some insurance is better than no insurance. But it is a really, really, really hard decision to make trying to balance out all of the expenses in life & trying to prioritize them, so I really respect any decision that an individual comes to regarding whether or not to carry health insurance.

I swear all this stuff is so complicated you need a dozen degrees to understand it all, but perhaps if we all put our heads together we can figure something out.

Separately, there is a program on ABC, Primetime America, this Wednesday at 10pm EDT, about Obama's proposed health care plan. I'm sure everyone will have their own opinions about it (& I'm not trying to spark any kind of political discussion), but I think at least it would be good for anyone to hear what it's about & to try to understand how it would affect CPer's. Like everything in life, these things are rarely black-or-white, so I encourage anyone to learn what they can about the bill so we can make informed recommendations to our congressmen.


take care, PA,
frances
Posted 6/22/2009 3:37 AM (GMT 0)
Hi Palady,

I'm sorry that it has been so stressful doing your research on Barrett's, although it is quite understandable! As you said though, the one important thing is that they caught it early, which means you'll be able to treat it early, & hopefully the treatment will be fast & effective! I am so glad that your cousin is willing to help you find some prescription drug coverage (as well as paying a new health insurance premium!!). You are very lucky to have someone so compassionate & loving in your life! I can understand not wanting to put her out on a limb & feeling bad about not being able to pay her back, but she wouldn't have offered unless she wanted to do this for you. She obviously cares for you deeply! You are quite right when you said that it's times like this when we find out who our true friends are!! True friends are willing to see you through the good AND the bad; they'll always be there when you need them! With your true friends & family by your side, you will be able to get through this all! I hope you can consider me & the others here some of your true friends (although I suspect I already know the answer to this wink). I & others here really would go to the ends of the world to help you. I'm sending you many happy, healing thoughts, prayers, and hugs, my friend! (((((((((((((Palady))))))))))))))))).

Best of with your visit with your PCP. I hope this time she is cooperative & understanding. And maybe the visit will even help you out with paying for your meds.

Well, I'm off to go & try to reconcile with my father, before heading to bed. Sweet dreams & sleep well, Palady!

hugs,
Skeye
Posted 6/22/2009 3:38 AM (GMT 0)
Frances,
I think the legislation you're referring to is HIPPA. And it does have some arenas where pre-existing conditions cannot be excluded, but you're right it's tricky and if you're paying a ton of money or have a huge deductible it does effectively exclude many of us.

Yes, you're right about group plans, which is why I think we do need a low cost public option in whatever health care plan comes out, but I'd better shut my mouth. Can't get political here. But the bigger the pool of people in it, the lower the cost.

For me, I know I will be applying for SSD and that may not be the case for you. Heck, in a few years I'd be eligible for Medicare anyway, even without SSD, but in the meantime, especially with this new condition which could be life threatening if it progresses, I need something. My cousin was here tonight and she's going to help - some - and I'll probably get at least a minimal policy (I've got to meet income guidelines, though, even though they're not Medicaid) but it won't Rx coverage.

There's just something really, really wrong with this picture. shakehead

PaLady
Posted 6/23/2009 2:09 AM (GMT 0)
((hugs for PA))
I'm glad to hear your cousin is there to help you. Did you find out whether you can get a 3-month supply from your current insurance? They probably won't let you, but maybe if they do that could tide you over while you sift through all the craziness. Also, I was misdiagnosed with Barrett's a while back & I know when I lost my insurance the manufacturer was willing to send me free coupons for a while. That was some time ago & I know manufacturer's are cutting back on how many free doses they give away (right when we need it most, wouldn't you know it!), but if you can get a supply to last you for a while perhaps it could buy you enough time to keep exploring options.

crossing my fingers & saying a prayer,
frances
Posted 6/23/2009 4:05 AM (GMT 0)
Thanks, Frances. Yes, I've been able to get 90 day supplies on most meds so far, including my percocet, effexor, & neurontin. I have the prilosec prescription ready to pick up but put a call into my GI doc today that I don't think it's working and I was asking if I could try some other samples this week before I picked up the prilosec. They didn't get back to me yet. That's kind of scary because here I am with a new serious condition that might require experimentation with meds, and no insurance. I saw my PCP today and she gave me 90 day supplies of sinus meds, although some of those (the nasal sprays) are very expensive. I'm going to get hard $$ wise this week because my dentist wouldn't allow me a payment plan for the crown he's going to put in starting tomorrow at 8am. But I'll save a about $500 if I do it now with the insurance; I still have to come up with $300.

I know you understand. It is scary and hard. One day at a time.

THanks for all your support!

PaLady
Posted 6/23/2009 5:19 AM (GMT 0)

PAlady, some of us that have insurance listen to you and what you are going through and realize that we could be faced with the same thing. Believe me, I am thankful for the WC as it covers all my medical in connection with my injury and pain for life. I am so glad I fought to keep that instead of some kind of a financial payout. That does not mean that other medical costs would not come up in the future as I inch up towards that retirement mark or the ability to work. I feel for you and don't minimize what you are going through. The sad thing is right now we have part of a whole generation that is facing the same thing. I stay out of politics but it would be nice to see our elderly and those approaching retirement to have less wories about health care or food. Enough said.

I visited a Kibutz in Israel several years back. Those are communities where people gather and share resources. I was able to talk with one of the elderly men who was  a leader and part of the original founders of this particular Kibutz. I ask him what was one of their biggest challenges. I thought it would be that they were constantly being fired at, shellled and enemies from two close countries attacking. All their windows had steel shutters. He stated that they had sent their first elderly members to anothet community to be taken care of and they felt so guilty they sent some members to go learn how to start a care facility and brought thgeir elderly back. My heart sank. He ask me what we do with our elderly. My first response was that whe ship them off to a facility and forget about them. That is not always true but too often. We have our students help the elderly, low income, singel parents and the disabled to move from their homes to elder car facilities, to new apartments, move belongings from storage or anywhere else we can help. We do not charge. Without being political, I want individuals to stop talking about wanting to be leaders and start being leaders. Now about health care. Have a nice night and I hope you get some stress free sleep. Blessings on you.   

Posted 6/23/2009 7:20 AM (GMT 0)

Wow I could not imagine not having health insurance!!!!!  I work to have it, I would love to not work it hurts so much to get up, then go to work, do physical labor and I hurt.  But my insurance is only 140.00 a month through them and they pay almost everything 100%.  If I lost this insurance my husband can get his from work but it cost so much more and they only cover 75% of all medical costs.

I will be in your shoes someday.. confused    I know me working will only last so long and with my evil supervisor it could be a shorter amount of time.  He can't stand it that I have issues but I ALWAYS get my 40 hours in but he cant stand me.

I'm just so happy your cousin is still being so wonderfully helpful to you.....

Laurie

Posted 6/23/2009 5:56 PM (GMT 0)
Fatherjohn & Laurie,
Yes, the thought of not having insurane is quadrupuling the stress - just what I need to produce more acid in my stomach. The heartburn is worsening, and the nurse finally called back today and left a message they'd call in a script for nexium but they didn't have any samples for me to try first. So I may pay for a 3 month supply of this med (i think it's at the highest co-pay of $50 per month) and it may not even work. On the GERD forum I'm learning that, just like with us with our pain meds, there are a variety of med choices and, as usual, some work for some but not others.

And this morning I had round one of a crown replaced (they give a temporary crown while they're having the permanent one made) and it required more work and therefore more $$ for me. Going to end up costing me $425!! And this dentist won't do a payment plan. I doubt I'll be going back to him. Never liked him much anyway, but he was one of the few that accepted my insurance. This afternoon I have a follow up eye appointment to make sure my retina isn't detaching!! Yesterday I saw my PCP (the one who had accused me of being dishonest a couple of years ago) but I didn't raise any of that "history". I don't have it in me right now. I treated her very sweetly and she was nice enough to me. I think when you start telling people you may be on the way to cancer they take things more seriously. Plus I was only asking her for my allergy meds not pain meds. The latter would have put us in a battle.

My head is spinning. I have to figure out a way to raise the head of my bed without screwing up my back and neck. Last night I woke up choking - acid reflux symptoms got very bad. Seems like things are getting worse. Hopefully the nexium will help, as the prilosec didn't.

I know I am not alone with the health care issue. And I appreciate your comments that you realize either of you or anyone reading this could easily be in the same place. Especially with all the lay offs. And employers changing what benefits they're offering.

It is exhausting keeping track of all this. Just exhausting.

PaLady
✚ New Topic ✚ Reply
123