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eckelsburrows 01-24-2011 12:18 AM

Here Because I was losing too fast...
 
Hi, my name is Brenda. I started a little over 18 months ago to lose weight. I am disabled with a bunch of things, fibro, MS, osteoarthritis, etc. At first I was using a nutritionist and I did very well, then last summer a change to my medications killed most of my appetite. I battle nausea everyday due to my medications too, but at least I used to get hungry and nauseous. Now it is hard to even look at food sometimes, yet other times I end up binging on stupid things like cheezy poofs.

Anyway, when I started losing 3 lbs a week I started losing muscle tone and started having issues with low blood sugar, so right now I am on a 1,000 calorie a day diet using up to 700 calories of ensure plus, with a goal to maintain or not lose more than 1/2 pound a week.

It's only been three days, but the food tracker is helping me to get to my goal I think. I check it after dinner, make sure everything is in there, and then try to get something else down before bed.

The thing that sucks is my state refuses to pay for my ensure because I can "still process solids" and "is 7 pounds overweight"! After working so hard to lose 60 pounds that one really hurt! And yes, some months I just can't afford it, so the last 3 or 5 days of the month until my check comes in I ration them out at one a day.

I can only walk for exercise a small amount unless I am with my PT person, and use a wheelchair about 30% of the time, so I am not burning a whole lot of calories...I'm using the free version, and it says I am using 1550 calories a day, but I don't know how accurate that is.

I know my issues are really different than most people who are here, but if there is anyone else out there like me, I would love to hear from them! For everyone else, good luck - the Medicare folks should let everyone get the paid version of this program!

Thanks!

mecompco 01-24-2011 12:23 AM

Brenda, welcome to FitDay.

I'm glad you've found entering your info into FitDay is helpful--I know it is an invaluable aid to me.

If you have any specific questions or need advice, don't hesitate to ask.

Regards,
Michael

jewelrymaker 01-24-2011 07:35 AM

Quote:

Originally Posted by eckelsburrows (Post 33264)
I know my issues are really different than most people who are here, but if there is anyone else out there like me, I would love to hear from them! For everyone else, good luck - the Medicare folks should let everyone get the paid version of this program!

Thanks!

Hi, Brenda! Welcome! I'm new here, too. I know what it's like to live on Ensure. During the worse of my chemo, that's about all I could stomach (literally!). And no assistance from anywhere to buy it, had lost job due to cancer, etc. Finally found a food bank to help feed my little boy, but all they had was rancid food, moldy tortillas, and bug-infested rice. Haha. Ick!

I was in a wheelchair, too, for months (cast for broken bones) and was so weak that all I could do alone (as could not afford a "real" wheelchair, only had one someone had to push) was scoot across the floor until I Was exhausted, then scoot some more, pull myself up to the counter in the kitchen. Had to eat on the kitchen floor as I could not get back to the table with any food or drink. Again, no assistance and nobody to help. And no exercise except for scooting around. Couldn't even use the stairs in my home, so slept on the floor or couch for months.

I know what it's like to have that kind of tough time and not be able to eat well or get much nutrition. And Ensure IS expensive. I ended up trying the generic and, like you, cutting back until I was on too few calories a day. (Unfortunately for me, I stil lgained weight due to the drugs I was on and such...that's what I'm trying to lose now!).

Sounds like you're a fighter, so keep fighting! Hang in there and stay in touch. And welcome again!

canary52 01-24-2011 04:14 PM

Quote:

Originally Posted by eckelsburrows (Post 33264)
Hi, my name is Brenda. I started a little over 18 months ago to lose weight. I am disabled with a bunch of things, fibro, MS, osteoarthritis, etc. At first I was using a nutritionist and I did very well, then last summer a change to my medications killed most of my appetite. I battle nausea everyday due to my medications too, but at least I used to get hungry and nauseous. Now it is hard to even look at food sometimes, yet other times I end up binging on stupid things like cheezy poofs.

I have fibro and osteoarthritis. I can't even imagine having MS with that. My heart goes out to you. To you and jewelry maker for the challenges you face.

If I may ask: what meds are you on and for what? Can you be given anything for the nausea?

eckelsburrows 01-30-2011 04:16 AM

Thanks so much for posting...I am amazed at what you went through, but not surprised as we still see it here in NH. I was able to get on medicare and medicaid and a state program called Choices For Independence, so I have a case manager, an hour long med review visit with an RN, and 17 hrs of home care a week. It is only because of that and the team that I am able to do the things I do, and I never take them for granted.

(For future knowledge NH medicaid people: falling in the shower and getting knocked unconcious helps get you qualified, but I don't really recommend it!)

Congrats on beating cancer - I just lost a good friend to it, and I saw some of the really nasty things people said to her when the steroids and chemo meds started to make her bloat.

I fought the fibromyalgia (and PTSD and head injury from domestic violence) from about 1985 until 1994 basicly without any medical care. Once I got away from my ex, I was able to manage it more or less, but there were times, especially when I was a single parent, that it was so hard to even get the strength to get up onto the bed. My mantra helped - it was before I became a lay religious, but had deep personal meaning to me, and I would repeat it every morning until I got myself in that car and on my 2 hr commute. It was "Gotta pay the landlord!"

It worked!

thank you again for writing back! I will keep in touch!

eckelsburrows 01-30-2011 04:38 AM

hi canary, didn't mean to forget you! As I wrote above, I also have slight head injury and PTSD from a domestic violence relationship in the late 80's early 90's. I think that I did what I had to do all those years. Around 1999-2000 we figured out that I had chemical sensitivity issues and a lot of them are to medicaitions. The trace amounts of antibiotics in meat and dairy were enough to make my joints achy and swollen and my skin rashy. Of course the nutritionist at the time was breathlessly going on about free range chicken and organic eggs. Because I was also severly hypoglycemic I had to eat 6 times a day, min 14 grams of carbs with 7 grams of protien each meal if not more. She finally stopped talking and asked why I was laughing. I responded "Ma'am, I'm getting divorced by one man, being sued for custody by another, not sure where I am living next month and get my eggs from the food pantry. I get 6 eggs a month, I have two kids, and I have no idea where they come from!"

To her credit, she recovered quickly, patted my hands, and started me down the long love affair with canned beans.

MS getting added in 2006, then osteo in 2007, then dysphasia and a bunch of other stuff forced me to retire, and yes, ex #1 got custody of the two biological kids. My adopted daughter and I stayed together another year, then I had to put her in foster care to get services for her. We all were always in toucvh, and we have all survived, and I see them all as often as any mom of college students. Thanks to my boyfriend I have two unofficial "steps" and three "grands". Thanks to God I have a ministry that is growing, so most of the time I can avoid dwelling on the fact I am dying at a slightly faster rate then usual. Planning to stick around as long as I can, and fight as much as I can. The hard part is knowing when to ball gag my type A activist evangelistic body and get my butt in bed and rest!

I take a regular coktail of medicaitons spread over 6 dosing times. I start at 6:15 am, go back to bed, then 7:15am with as much food as I can get down, then every 4 hours after that. There are pills, liquids, and every other night an interferon injection. That's not including PRN's of course. Hint: If you have trouble remembering to take meds, most life alert systems have a feature they can call you and remind you not only that you have to take them, but what type (pills, shots) etc you need to take. It's been a lifesaver for me as I seldom have any sense of time or time of day....

There's several meds in the "zine" family that help nausea (meclazine, compazine etc) which I am allergic to. I use peppermint candies, saltine crackers, dry ramen noodles, the smell of a peppermint candle, and when I can get it cola syrup. Cola soda (flat) or ginger ale (flat) work sometimes, and of course if I lived one state over in Maine I would have the choice of marajuanna. I know there are also some that are used specific to chemo nausea, but whatever they were they couldn't be taken with my cocktail of stuff.

How long have you had fibro/osteo together? I didn't get the osteo until 2007 so I am still getting used to the joint pain from that. Water PT helped some, as does hot showers, but then I have to be careful not to overheat as it makes my MS worse.

will definately keep in touch with you too! Thank you for writing to me!

eckelsburrows 01-30-2011 04:39 AM

Michael - wow, your stats are amazing! Thank you for writing to me!

mecompco 01-30-2011 01:32 PM

Quote:

Originally Posted by eckelsburrows (Post 34161)
Michael - wow, your stats are amazing! Thank you for writing to me!

You're very welcome. I think you're amazing for having the wonderful postive attitude you do having to deal w/all the medical problems and past issues you mention--be proud and stay strong!

Regards,
Michael


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