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Grime
07-18-2009, 08:12 AM
Spent two more days at the VA and they still can't figure out what is wrong with me.

From what I understand I have one of the nations top Rehume and he is at his wits end. He even suggested I go to the Mayo Clinic. He ordered more test and a special blood test that VA doesn't really do. One thing that makes it so hard for him is that I don't have the joint pain. I still have my strength. He ask me to squise his hand and he was in pain when I finished.

White blood cell count 2400
Loosing weight. I look like a walking dead person. There is only skin and bones left.
Still on no meds.
Asked for a nutrition diet plan and couldn't get more out of then other than drink Ensure once a day.

My dermatologist keeps saying Lupus but my rehume says no. She want to put me on Piluquen (sp). She had me on display with some med students. I didn't mind as one of them might just find a cure for this stuff.

My little wife is about to go nuts with worry about me.

I'm finished thanks for listening.

debbie-b
07-18-2009, 08:43 AM
I am sorry, that they can't figure out, what is wrong with you.
My husband is not sick, but went to the doctor for a physical and ask the doc why he has lost weight, all his life he was 150 lbs at 6.3 feet tall, very thin, now he weighes only 142 lbs. The doc said everything checked out ok, he just has to take in more calories. We also looked at ensure, but it is pricey, now I make him shakes, ONE CUP OF HEAVY CREAM, THREE CUPS OF WHOLE MILK, THREE TBL SPOONS OF SUGAR, TWO BANANAS in a blender, that is about 800 cal. a glass, 3 times a day. He has been drinking that for 3 weeks now and has gained 6 lbs. I also change the fruit to strawberries, raspberries or to chocolate and vanilla. He said it was easier to drink the cal. instead of eating alot of food. I hope this helps, but off course only if there is not a serious reason for your weight loss.

Debbie

Grime
07-18-2009, 09:05 AM
Thanks Debbie,
I'll tell Lisa about the shakes. I'm like your husband. 6' and last summer I was right at 160. As of last Tuesday I'm still 6' and 129.7. 90% of the weight loss has been since December. I could understand to loss if I was working full time out in the heat. No jobs here.

We had thought about the weight gain power from GNC but was told by the nurse not to use this stuff it would be bad for me.

DrinkofWtr
07-19-2009, 10:14 AM
I am sorry that you haven't been diagnosed yet with what is wrong. My father is in the same boat. He just gets thinner and thinner and no one can figure out why he can't put on any weight. They told him to drink Gatoraid and Insure.

Rastagirl
07-19-2009, 11:54 AM
Hi David...

I'm really sorry to hear about your difficulty with gaining weight....and with no obvious medical reason. I've struggled with that exact issue for many years now. Hugs to you... :hug:

Quite the opposite of you...I've always been small. I was 5'5 and 90 lbs. when I was diagnosed with Lupus at age 18. After diagnosis, I went through periods of losing my appetite drastically and having a terrible time maintaining my weight. I had times where I didn't have any normal appetite signals....none. I could go right past mealtime and not even feel any hunger at all. If I would skip a few meals a day, I would lose 5 lbs. just like that. It got pretty dangerous if I ever got a stomach flu or really sick.

I probably spent a good 3 or 4 years with my doctors trying to figure out if there was a medical reason why. I had every possible test run....all kinds of GI procedures....upper endoscopy, small bowel biopsy....endocrinologists, hematologists....even quite a few nutrionists along the way. I got so darn sick of tests and doctors, and after every single one of them.....I always got the same answer: we don't know why this is happening. It was maddening! There were a few doctors along the way that told me that they believe that for some people, Lupus just screws with your digestive system and makes a mess of things. Makes it harder to absorb nutrients and makes it harder for our bodies to process them and use them correctly. Especially during times of active disease.

After many years of wasting my time and money, and suffering endless frustration over the entire topic, I finally decided that since there was nothing medically wrong with me (other than Lupus) that was causing this, I would stop wasting my time and I began working with a really good Nutritionist. She helped me find a good eating plan that has worked for me in at least maintaining my current weight, or keeping a few pounds above it. She went over ALL my old tests and records, scrutinized my Food Diary I completed, and asked me a lot of questions about my size and eating habits as far back as childhood and all the way through my Lupus history. She spent some time talking with me about what a strain, in general, Lupus puts on our body systems...especially the entire GI tract.

She was amazed at how many calories I could eat, and yet maintain such a small weight. She came to the conclusion that I have a very high resting metabolic rate... always have. And after my last pregnancy where I almost starved because of extreme morning sickness, she believes my body became hyper-metabolic and burns calories at an even more rapid rate. I'm curious....you've lead a very active, hardworking lifestyle for most of your life....do you think you have a high metabolic rate, where you burn calories quite rapidly just with normal activity?

The only thing that has helped me NOT lose weight, and maintain a fairly normal body weight and good health is a plan that includes five small, highly nutritious meals each day, with high calorie snacks in between each meal and at least two high calorie, chocolate milkshakes each day. I'm a little surprised that the nurse told you (without any medical reason to back it up) to avoid the protein powder from the nutrition stores. When used correctly, in conjunction with the rest of my diet, I have done wonderfully on it. I use a recipe similar to what Debbie shared with you....but add a few additional favorites, like chocolate ice cream for even more calories. I also use smoothies sometimes for breakfast and load them with extra calories too. I'm always very careful to measure the protein powders correctly, and I do try to get most of my protein and nutrition from the foods I spread out over my day. But a milkshake in the AM and one at night, has helped me maintain my weight, and I've been in pretty good health for the past 5 years or so. I used the Ensure drink for a period of time long ago, and grew to HATE the taste of it. That's why I've opted for my own shakes too. They are so much easier to stomach.

Sorry if this was more information than you needed, but I sensed that you were starting down a road I have spent many years traveling...and I wanted to prepare you for the fact that all the doctors and tests you encounter might not provide suitable answers, or any peace of mind for you. I hope and pray that they will....in the meantime, you should keep working at finding some nutritious options that work for you. Don't give up, David.....for awhile I had to make eating and nutrition a #1 priority in my life and focus on pretty much that for a period of time. I actually got sick of food. But once I figured out what worked for me, I have stuck with it.....and I'm thriving for the first time in many years.

My thoughts and prayers are with YOU....and Lisa. :veryhappy: Tell her to hang in there and keep trying to find what works best for you.

Fondly,

:cool2: Lori

p.s. And remember, when you do have those great days of sailing, or any extra activity, you've got to plan ahead and replace all those calories you've burned, plus some.

debbie-b
07-20-2009, 05:03 AM
I have to tell you guys, that I have been gaining weight, I am now at 40 lbs more than I need. It all started with lupus and RA and the joint pain, I can't exercise or even take a long walk anymore. My metabolism is very slow and I am not able to bring my heart rate up through exercise. I was always envyous of my husbands ability to eat anything he wants, without gaining weight, but now I know, that people who want to gain weight, are just as bad off, as people who want to lose weight. If I could just take my 40 extra lbs and give them to my husband, we would both be happy.LOL

Debbie

Oluwa
07-20-2009, 06:13 AM
Hi David...Have they looked at other diseases besides autoimmune?


I am not sure if the Arizona Mayo clinic has a diagnostic center but in Florida they have a Division of Consultative and Diagnostic Medicine which provides comprehensive evaluations to out-of-town adults with complex medical problems. I was researching it prior, seeking answers for my head to toe rash and sores..then after 7 months it disappeared. Woohoo for me.


I know from their website Arizona just has Consultative and not Diagnostic. Call both…here you go..

Arizona
1-800-446-2279 (toll-free) 8 a.m. to 5 p.m. Mountain time Monday through Friday
Florida
904-953-0853 8 a.m. to 5 p.m. Eastern time Monday through Friday

Be well, David I pray.
Hugs and love,
Oluwa

mountaindreamer
07-20-2009, 09:53 AM
hi david,

you have every right to be "getting mad". I know Lisa must be very worried about you and your struggles. If the VA recommends you go to Mayo Clinic, will the government pay the bills?

You might want to consider starting Plaquenil....it really helps a lot of people, but it takes several months to start working.

Hope your day today is better.

Danica01
07-20-2009, 11:03 AM
What a frustrating battle you are fighting! It must be hard to watch this happen to you body and not know how to fix it or make it better. Your wife is probably so worried and obviously loves you so much. Lori gave you some great advice and I have to admit, she has me craving a shake now!!!!!!! Debbie hit the nail on the head, those who want to gain weight are struggling just as those wanting to loose weight. Both ends of the spectrum are so hard! I just really want you to find what works for you and can not wait until you post that they have found something out. I would check into what Oluwa was talking about. Maybe it is something that they are not even looking for and it may take a special doctor to figure out this mystery! I wish we had doctors like the ones on House! They would never give up and keep plugging away until they figured us all out! Please hang in there and keep us posted on what they find and what you have found to work for you :hug:

lucky7
07-20-2009, 02:06 PM
AWWW, so sorry David. Its just not right is it? I too have some drs saying Lupus while my GP (the one who has to make it OFFICIAL) is shaking her head NO. I want to kill her. I do hope you get your answers you want,need and DESERVE. You are in my HEART:heart:

Angel Oliver
07-21-2009, 03:16 PM
Oh David,

Im so sorry to hear you are still going through the 'unknown'. Yes the shakes sound good,try them see if they help with your weight.Say hi to Lisa for me. I sure hope you find a doctor and soon who can find out once n for all whats the matter,cause there is obviously something.
Sending you gentle hugs and hope you get the right help soon. Maybe trying the new place Oluwa has given you may have to be an option....a better option. I know you have been to many appointments,but maybe this is the one.Fingers crossed.

Love n hugs
Amanda.xxxxxxxxx

Grime
07-22-2009, 09:07 AM
Thanks for all the replies guys,

I bought a blender yesterday and going to start making shakes. I had much rather drink something than try and eat a good meal.

What I don't understand is why the rehume will not put me on Palquenil (sp) my dermatologist want to do that many months ago. At least that would help in time as I know it can take months for it to start working.

They are making appointments for a upper and lower GI along with a bone marrow text. After that there is nothing more to test that they can think of. I'll call over to the Mayo clinic over in Jacksonville, Fla and see if they take VA payments.

Lisa and I could sail over there only it would take about a year to get there after we stop and enjoy all the different sights alone the way.

Lori,
I had Lisa read your comments and it made her feel better. She is so worried that I have cancer and this eased her mind.

A friend of ours invited Lisa to go sailing with her until her husband can catch up. She sure wanted to go and it would have been good for her. I'll post a couple of photo, in my album, of the day our friend left by herself. With the look on Lisa's face it tell the whole story.

Huggs to all,

Grime
07-22-2009, 12:07 PM
I called the Mayo Clinic over in Jacksonville, Fla and they will take VA payment with the referral from a VA doctor. If after my next appointments and still no answers I'll suggest that I go there. Getting their will be the hard part. We'll figure that part out when the time comes.

Rastagirl
07-22-2009, 01:21 PM
Thanks for all the replies guys,

I bought a blender yesterday and going to start making shakes. I had much rather drink something than try and eat a good meal.

What I don't understand is why the rehume will not put me on Palquenil (sp) my dermatologist want to do that many months ago. At least that would help in time as I know it can take months for it to start working.

They are making appointments for a upper and lower GI along with a bone marrow text. After that there is nothing more to test that they can think of. I'll call over to the Mayo clinic over in Jacksonville, Fla and see if they take VA payments.

Lisa and I could sail over there only it would take about a year to get there after we stop and enjoy all the different sights alone the way.

Lori,
I had Lisa read your comments and it made her feel better. She is so worried that I have cancer and this eased her mind.

A friend of ours invited Lisa to go sailing with her until her husband can catch up. She sure wanted to go and it would have been good for her. I'll post a couple of photo, in my album, of the day our friend left by herself. With the look on Lisa's face it tell the whole story.

Huggs to all,

Hi David....

So good to hear from you. I'm glad Lisa's mind was eased a bit....I remember very well all the worry that came with going through this. It's scary. And the frustration of trying to figure out what's causing it and how to treat the ever-dropping weight. I went through a period where I couldn't really stomach much food....it just didn't taste good or it seemed like it took too much effort to eat. That's when I used the shakes the most. They went down easy.

I was never a big breakfast eater anyway, but when going through this, my stomach could never handle any solid food before noon each day. So, per my OB doctors orders, I used my shakes and anything else that actually sounded or tasted good. And that would change from day to day...some days I would want stuff with melted cheese or I discovered baked potatoes with just a little butter would taste good, or I remember one night when I was dangerously close to having a feeding tube put in, my husand begging me to think of something...anything...that sounded good. He said no matter what it was, he would go get it....and right at that moment Alaskan King Crab sounded good. So he went to the yellow pages and started calling restaurants till he found one that would cook my King Crab and then chill it, because I wanted it cold and without butter. Alaskan King Crab is actually what kept me alive for awhile....though it nearly made us go broke in the process :laugh2:.

So, maybe see if the shakes can help you get some calories into you and if you think of foods that sound good, try a few and see if there's a particular food or flavor or consistency that appeals to you. I found that very mild soups also helped get something warm into my stomach once in awhile. For a period of time, I had to sort of ignore being particular about the nutritional way of eating.....and just find things that would work for me, in order to have a reasonable calorie intake. And it does help if you're able to get in a multi-vitamin each day to compensate for the unbalanced nutrition during a time like this.

So keep on plugging along, David. Hold onto that tough spirit of yours and keep working in the right direction towards better health. I know it gets extremely frustrating....but Lisa needs you around for a good long time and we all do too. When you go to the VA next visit, you should ask the doctor what harm there would be in trying Plaqenil....getting started on it to see if you might respond. I wonder if it would be possible for your dermatologist to speak with or consult with your Rheumy. You might ask if he/she could go to bat for you. And it sure wouldn't hurt to start the process of investigating the clinic in Florida....if it works out, then it was meant to be and you will find a way to deal with the transportation when you get to that bridge. I wouldn't give up on that idea....it may be the place that has some real answers for you.

Sorry Lisa didn't get to make that sailing trip.....awww....here's a :hug: for her from me. I'll check out the pics for sure. Sorry she missed the fun.....but there will be plenty of fun sailing days for the two of you in the future. I can feel it in the wind! :yes:

Take care of YOU.....and send my love to Lisa too!

Affectionately,

:cool2: Lori

Oluwa
07-22-2009, 01:41 PM
David..

I am so glad that they accept VA payments...when is your next appointment. Maybe you should see if they could push it up a to an earlier date to get that referral...130 pounds is not a lot, David for being 6'...30 pounds that is a significant amount of loss.

I am thinking it is more than just losing your appetite. Do you normally have a fast metabolism....usually for one to lose 5 pounds overnight or in two days they do have a fast metabolic rate from my reads. Basically they have control over their weight loss if they can regain it through eating frequently through out the day...but if there is no past history...I would be concern.

I remember while in the Navy some of my shipmates had evening rations passes, so they could eat before they went to bed, they had a fast metabolism...so as not to lose weight.

Shakes are used to boost your caloric intake not be your only source of food..but it is better than no food, at least it will be some nutrient.

I have been researching metabolic rates because mine seems awfully slow...

Keep well...
Love,
Oluwa

Grime
07-22-2009, 05:49 PM
For years I would eat a number of times a day. About mid morning I would have a Little Debbie or something I could carry in my saddle bags. Then a solid lunch, sandwich and pudding. Then something in the mid afternoon. Then a good dinner and just before bed I would have a bowl of cereal.

We don't do fried foods or junk food.

I worked long hours and hard for years now I don't work and most of the time just sit around waiting for Lisa to get off from work.

There is no way to speed up anything in the VA system.

mountaindreamer
07-26-2009, 10:16 PM
hi david,

so glad to hear that the mayo will accept VA payment for your care.....i went to the mayo in jacksonville several years ago, and i am still i awe of how well i was treated. they are just great, and make you feel so special. you will get good care there.

they have several options for on-campus housing while you are there. I went 3 times and staying on campus makes it a lot easier. They schedule drs. appts., tests, labs, etc. throughout the day, and it makes it easier to just walk down the side walk instead of having to drive each time.

it can take some time to get in there, so you might want to call the dr. at the va and get him to go ahead with the referral.

Danica01
07-26-2009, 11:11 PM
I think the visit to Mayo will be the best thing you can do for yourself. Like mountaindreamer said, you will be able to stay there with Lisa and it will constant tests until you get an answer. I am just so happy they will take you :veryhappy: I think you should try to push for a closer appointment and have them write the referral right there!!!!! Please keep us posted on how everything is going and what the doctor has to say. I am thinking about you and sending you healing thoughts and gentle hugs to get you through this rough time......hang in there and hang on to Lisa through all of this :hug: