I'm scared - got endo report

I'm dropping tears as I type. I'm so sorry you had to get results like that. Its just another thing added to the long list of sorrows. I understand late night M&M's aren't going to help how about if they made M&M's the size of easter bunny eggs that might help alittle.....

If I know you at all you will cry for a few hours then buck up and trudge through what you have to get done.

I guess we will lay off stealing WhiteBeards garbage cans for a few months...

You'll be in my prayers
Laurie

PaLady, First of all, please accept a soft hug from me:
((((((((((((((((((((PaLady))))))))))))))))))))
Now concentrate of breathing. Try to relax if even just a little bit... I really am so sorry about this. I know it wasnt' what you were expecting. When it all soaks in, I know you-you'll become an expert on all the information you get from doing your own research. And that really is a good thing-to become knowledgeable. I know you have been struggling with the insurance running out,as all of us would be. You are a very intelligent lady, I know you have been weighing your options and trying to figure out what to do. Bless your heart, PaLady.

I understand you are tired of losses. You have been through alot and have had alot of things unnecessary being thrown at you. I do wish I had the answers for you. I know it is overwhelming. We all are here for you and will always be every step of the way. You are not alone. You do have all of us pulling for you. You have our love, support, encouargement, shoulders and anything else you may need along the way. I wish I knew the right words to say to you. I wish I knew what I can do for you. I know you don't need something else to deal with and certainly not another health related issue. I am here for you PaLady. We all are. Vent as much as you need to. Try to imagine your CP faimily in your living room all around you giving you hugs. That is where we are.
Anice

PaLady - I too have Barretts. Mine has either healed over or is healed completely. They can't tell for sure, but they haven't been able to find it in the last 4 EGD's they have done. Including the one a couple weeks ago while I was in the hospital. Has your doctor thought of switching to something else besides the prilosec? For me prevecid and aciphex work better. I did have the surgery because of the Barretts, high refluxes, and the PPI's not helping anymore. I kinda flipped out when I first found out about the Baretts myself, but have come to terms with it. I guess it helps it has somehow vanished also the last 6 months. As I said though, they aren't sure it it is actually gone or just healed over and is deeper now.
My GI and surgeon told me there are a lot of things that can be done to stop Barretts even when low dysplasia is present. They told me that usually they want to watch it close with frequent EGDs. I have to go every 6 months at least now. I also got the speech and pamphlet about how we can't have the comfort foods anymore. That sucks. I have added them back a little though. I have a weakness for chocolate, I can't help it.
Take care,
Bill

     Lady,

 

     You are so wonderfully articulate. You care about others with an ease I havnt seen in years. Your ability to be a beacon of light in terribly dark times makes me want to aspire to be more. To try harder. It is hard to know your heart is breaking and there is so little that I can do to help. *warmest huggs*

 

    

 

     PAlady's Pre-Midnight Snack!

   

 

2 cups sugar

1/2 cup light corn syrup

1/cup hot water

1/4 tsp salt

2 egg whites

1 tsp vanilla

1/2 cup *chopped pecans

 

Combine sugar, corn syrup, hot water and salt in saucepan (dark* or clear NOT porcelin). Cook to boil stirring constantly, Cook, without stirring, to 250F, hard-ball stage. Remove from heat. Beat egg whites untill stiff. Pour hot syrup slowly over egg whites, beating constantly. Add vanilla and beat until candy forms soft peaks and begins to lose its gloss. Add nuts. Drop by teaspoonfuls onto wax paper.

 

  I wish I could help in some way. Your so wonderful and kind. To everyone, from all walks of life. In prayers and hearts.

 

*huggs*

dani

Hi Palady,

I was about to head off to bed, as I've barely slept in the last few days (horrible nightmares on top of all my normal problems) & over the last several weeks, but especially the last several days, my vision & function of my eye has drastically changed for the worse, so I'm having a real hard time seeing, let alone reading (I will be calling my doc first thing in the morning), BUT, I just saw this thread & knew that I had to respond. Okay, that's more than enough about me, that's not why I am writing, YOU are the one who needs love & attention right now, and I don't want to take away from that.

Your post had tears coming out of my eyes. I'm serious. I'm just so frustrated, and heartbroken, and mad, and scared for you! Life just seems to be throwing you curve ball after curve ball & it just isn't FAIR! Why does it seem that the best people always seem to be dealt the worst cards? Palady, you have one of the biggest hearts of anyone I know!! You are so compassionate and caring, and wise. You are always the first to offer comfort and support and reassurance. I don't understand why God is being so hard on you.

I wish that I could be there for you in person & give you a great big comforting hug & a shoulder to cry on! I can't imagine how scared you must be, with your insurance ending, this new, "unknown" diagnosis, as well as all the changes that you have to make (no m&m's, or comfort food, which is HUGE to us in the world of CP ). I know that you are so tired of being disappointed. It is very very hard on you emotionally, grieving such losses. As if we didn't have enough physical problems, alone, to deal with! But try not to think of everything at once. I know you have to; you have to deal with these things, but what I mean is, if you can, try to take things slowly. Don't get too far ahead of yourself, if you can help it. Take things one step at a time. One day at a time. One hour at a time! I know that you'll get through this! You are SO strong!! And we are all here to support you -- in any way we can.

As for raising your head at night - I know that is going to be REALLY hard for you with your neck! You have a hard enough time finding a good pillow to use, and now, you are expected to change your sleeping arrangement?! I know that you don't have the money right now, or not in the foreseeable future, but I sure wish that there was some way that we could get you some kind of electric bed, that allowed you to create an incline, so that you could still sleep with your head raised, without jeopardizing your neck!

Have you been talking to anyone? A therapist, or even your cousin? I know you know how to handle things like this professionally & that you can talk freely with us, but it still might be helpful to talk with someone in person (again, how I wish I could be there for you!). I'm worried about you! You really are like family, and I hate to see you hurting so much, both physically, economically, and emotionally! Please, do email me ANY time, day or night, if you need to talk - you know I don't sleep! I really do feel love for you & others on this forum, and care about you deeply! Please remember that. And if there is anything, anything that I, or we, as a forum can do to ask, don't be afraid to ask us! We all care about you!

Sending you all the love & hope, and positive thoughts I can muster! You are always in my thoughts & prayers, but I will try to step it up a level for you ! (((((((((((((((((Palady))))))))))))))))))). Sending you big, soft, gentle hugs - the kind that make you feel so safe and warm!

Please take care of yourself! Let yourself cry & grieve as much as you need to, it's part of the healing process!

Many hugs & love,
Skeye

Hi PA Lady,

First, I will send you tons of gentle hugs, and some comforting ones as well....   You don't need more medical concerns at the moment, but it is far better for you to know that you do have the problem than to keep things in the dark. You have the insurance for the time being to get you started, and that will be long enough to get you hopefully enrolled in the prescription assistance programs for your meds.

That also gives you some time to work on the insurance concerns and the 401 K.

I don't know enough about the esophagus problem to help specifically, but in reading the other posts, it seems that this medication has a good chance of taking care of the problem, with the right diet changes and medical watching.

Hang in there dear lady. I'm glad that you reached out and asked for some support. It's hard to do sometimes, especially when we are scared and feel alone. The wonderful thing about here, is that we are never as alone as we once were. There are always a few family members hanging around.....

Hugs again,

Sandi

Hi PAlady, I'm so sorry to hear about the Barretts. But even worse to have to change your diet as well, not good. Those old M&Ms are a great lifter when your spirits are down. I guess like all changes you will find it hard at first but after awhile you will find another source to lift those bad days, laughter or the comfort of a good movie or sometimes an animal can really help. I really feel for you with the health insurance uncertainty, it must be a huge worry for you. You deserve a guardian angel to wave her magic wand to solve all issues. My heart goes out to you, golitho

PAlady, I just returned from work, another late one. The problem about raising the head of the bed is not difficult. I have helped several people do it. I simply cut blocks out that would fit under the heardboard or posts which raised the head of the bed. That way your neck does not get messed up but your head is elevated. If you think it would work I can get these for you. Just a thought. Hope you get some sleep tonight.

Bill - thank you so much. My brain is pretty fried right now, but I know I'll have lots of questions and it's nice to know there's someone here on CP dealing with the issue. GI stuff is new to me - except I had my gall bladder removed when I was 19 - 40 years ago! But no problems since until now. So I will be asking and be over on the GERD forum when I have some energy. It all just feels so scary right now.

BTW what is Aciphex? I don't even know any of the meds. Just that zantac didn't work. And I asked my doctor today about the difference between prilosec and nexium and he said they were "first cousins". My real cousin is a pharmacist, so I do have someone to ask. I'm getting a 90 day supply of the prilosec (2/day). At least if nothing else that's OTC here in the states, but much more expensive. Still, I know a family member would buy it for me if I needed it. The problem will come if we have to start switching and playing with different meds. I don't want to think about that now. I'm going to make like Scarlet O'Hara and think about it all tomorrow. Probably not even tomorrow, as I'm waiting for my dentist to call to see if I can get a crown replaced before the end of the month. And an eye appointment next week. And 2 PT sessions left that I don't want to let slide! And then I'd better pop in one more time to my PCP's office. UGHHHH!!!!!!!!!!

Fatherjohn - my PT recommended something like that, because I know I couldnt' use a wedge which is what's recommended. Honestly, I'm not even sure how my neck and back would do with any kind of elevation. My neck is so fragile.

Thank you everyone. I can't thank you enough for your kind words and hugs and gentleness. Whatever would I do without you????

(((((((((((My Healing Well Family))))))))))))))

PaLady

PALady,

2 months ago I found a pillow from Mediflow that is a Water/Fiber pillow.....it costs about $40 and has a 90 day money back guarantee.  It has been the best purchase I have made, I posted about it when I got it.  I've been using it every night, it is the ONLY pillow I have used that actually allows me to sleep comfortably, it cushions your neck and is not too swishy because of the fiber.  I've spent hundreds over the years since the cervical fusion on pillows.  With your GI problem I think you will find this a helpful solution for your neck.

mediflow.com   I got mine at a CVS where they sell Durable Medical Equipment.

((((((((((((((((((PA))))))))))))))))))))))))

XXOO
Patti

PaLady -
Achiphex is another PPI. From what I understand they all are similar, but certain ones work better for different people. Prilosec didn't do anything for me. I did take Prevecid for a while and it worked pretty well. I was on Nexium after a couple ulcers showed up from a lot of biopsies. Nexium worked really well, but I had to get samples because my insurance wouldn't pay for it. Achiphex in my opinion is between Prevecid and Nexium. Some people I know like it a lot better than any other PPI. My son also takes it and hasn't had any problems with it and it has stopped his reflux issues. I had heard they were releasing a generic of Aciphex, but haven't seen it myself yet. I am using Aciphex right now and I haven't noticed any side effects with it. My surgeon wanted me on Protonix for a month after my recent Nissen revision, but my insurance said I had to use Aciphex first.
Take care,
Bill

PaLady, I completely understand every word in your post. It isn't political. It is personal. And I can really feel your frustration. It is an unfair(to say the least) situation. Your insurance runs out. Replacement insurance is terribly expensive and doesn't offer medication coverage. And you can't get Medicaid or Medicare. It is a bad situation. I wish I knew someone or knew how I can help. SOMETHING should be done about this. And you can't access your 401K? What is so sad is that you are probably not alone in this type thing. There are probably many in this same position. And it concerns me for them too.My main concern in this is you. You are having all this thrown at you.I wish there was some type of adviser out there who could help lay it all out and help you with which options would best suit you. I wonder if there is someone like that available, who would do it at little cost if any..... But, this is so unfair. You need insurance.I shouldn't even send this post. Things aren't coming out like I mean for them to. But I care so much for you. And to have you facing all this stuff is, well we a know... You do have a plate full. Let us know if there is something we can do for you. Research? Phone calls? PaLady, just come here and tell us how we can help, and it's a done deal. In the meantime, we are all here for you. Anice

Post Edited (anice) : 6/19/2009 1:52:18 PM (GMT-6)