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MulkeyJ, you mentioned that you are on Medicare and have Part D insurance. I am a trained Medicare counselor (SHIBA), and have worked with many people who have limited income. You said:
Also, we live from month to month, so $100 to $120 is out of the question. I'm lucky if we get to the end of the month and have something for the husband to eat, let alone for me
Depending on your monthly income and amount of resources, you might be eligible for programs that help pay the Part D Premium, pay for your Part B premium, reduce the cost of co-pays, and eliminate the donut hole. The exact details vary from state to state. You can pm me if you want more details.
Not being able to afford medications that could help is one of the worst features of our health care system.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
You mentioned you were going to try lomotil.. the generic is rather inexpensive.. I must have used it for at least three years.. yes I was tired..but it did slow down the D.
My husband was unemployed when CC hit me. The food for me was expensive when I wanted to try something other than chicken, rice and eggs... at that time there were very few gluten free things in the grocery store.. there are many more now and the prices are less than they were in specialty stores.
I hope you find some relief.. one day at a time... it is a joy to have good days!
grannyh
Thanks Granny. I'm at the point where I'm so darned tired anyway from not eating, and from the big D all the time that I'm just about ready to say to heck with it and just EAT everything. I'm so starving.
MulkeyJ, I was just rereading this post and am sorry about all of the frustration this has brought to you. I would definitely see if Rosie can help you work through some of the insurance issues, I know this can be frustrating and the solutions out of reach, but hang in there this will get better. At this point the diet is your best medicine, and I can say with certainty that while the Entocort helps, it really does need to be coupled with the diet, the Entocort while helpful is not a magic pill.
I also have not had he Enterolab testing, but my body has clearly let me know whats bothering me. I had stripped my diet down to chicken, lamb, fish, rice, carrots and some peas for the last 3 months and am slowly adding one ingredient at a time back, but I am only adding 1 ingredient every couple of weeks. I have like many others found that gluten, dairy and soy make my symptoms worse even with the Entocort.
The hard part in dealing with this can certainly be sticking with the diet and having the patience to get through each day. To deal with the hunger I found that eating several smaller meals through the day helped. As hard as it is try and keep a positive attitude. Dealing with MC is really a series of small victories, each of them bringing you one small step closer to feeling better.
Eating often does help.. If you like cooking and trying to make your own stuff (i tried making rice milk once:)) you will be rewarded. Personally, I hate to cook.. For years it seemed all I did was cook and eat trying to get ahead of CC.
I agree with Joe, if Rosie can help you with prescriptions it would be great. Some drug companies will give you meds for free as well... I have a relative who received a drug for free because of their financial situation.
For me entocort has been a magic pill.. I am fortunate.. it took awhile and I didn't over due on the forbidden stuff at first..rarely do now either.. but I don't feel like I have to eliminate everthing I ever liked. Since I am an old lady.. I really am not worried about long term effects of my one entocort a day treatment.
The hardest part for me at first, was staying hydrated. If I got sick to my stomach..that with the d would land me in the hospital. Those experiences were awful.. they medical people felt like I should have kept my fluid level up.. no one believed anyone could hit the john 20 times a day with D... add vomiting with the flu or a medicine I couldn't tolerate.. and they thought I was nuts... pedialyte was something I could tolerate to keep my electrolytes in balance. Now I can use gatorade.much cheaper than pedialyte and has longer shelf life:)
grannyh
"You can make an inexpensive homemade rehydration drink. Measure all ingredients precisely. Small variations can make the drink less effective or even harmful. Mix together:
1 quart (950 ml) water
½ teaspoon (2.5 g) baking soda
½ teaspoon (2.5 g) table salt
3 to 4 tablespoons (45 to 60 g) sugar
If available, add ¼ teaspoon (1.25 g) salt substitute, such as "Lite Salt".
(source http://my.webmd.com/hw/health_guide_ato ... ar=hw86827 ). ( contributed by member Carrie)."
DISCLAIMER: I am not a doctor and don't play one on TV.
I made up a gallon of this recipe when I was so dehydrated about two weeks ago and after the second day my weight went up 7 pounds and my legs swelled up like balloons. The skin on my legs was extremely hard and shiny from the water retention. I went back to drinking just plain tap water and my weight went back to where it was before. I feel this was a result of the salt in the rehydration recipe even though it is only 1/2 teaspoon in a quart of water. It did taste good, I enjoyed drinking it. Now I am drinking more just plain water and since I no longer have the diarrhea I am not dehydrated. Just thought I would mention this.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
I never drank but one small bottle of the pedialyte.. I think they were 4 oz bottles. During the summer here in Texas I have been drinking one of the small bottles of lime gatorade..more preventative than anything and the gatorade seems to keep leg cramps away... The rest of the day I drink water or coffee...
grannyh
I am so sorry you are having such a bad time of this--I remember those days well, before, thank God, I found this group. The information about length of time required to heal is important. Whereas I certainly am much, much better, I still have a way to go.
I wanted to recommend a book I just read, checked out from my local library. It is called The Gluten Connection by Shari Lieberman. It really reinforces that I am doing the right thing. There is a section in the book that goes into what you can do if you are still having problems, and there is a lot of good advice given. I don't think the author recognizes the length of time required to heal, but the suggestions might be of some benefit anyway.
And as they say, knowledge is power! Spend as much time as possible reading through the posts on this site. You might find a little hint that will make a difference, I know I have learned so much from these wonderful gurus!
