Friday, July 22, 2011

Repeat; It's the Uric Acid, it's the Uric Acid

You know, sometimes we doubt our choices.

A couple of weeks ago I started questioning my choice to become a vegan. My legs and ankles were swollen from mid morning until I went to bed. Now, I take Lasix for heart failure, but it hasn't ever seemed to work very well for me, but the constant swelling was something new. I started getting worried...was I getting enough protein on this vegan diet? I read that protein deficiency can cause swollen ankles and legs...and started thinking...ooohh, maybe that's what my problem is...too many carbs, not enough protein.

And sooo, a couple of days later wouldn't you know I began to eat meat. When I say meat, I mean animal protein. A lot of people refer 'meat' to be red meat, but to me meat is all animal protein. I bought some haddock, as well as some skirt steaks, and I even bought 2 tiny lamb chops. I really thought I was doing the right thing, but deep inside I knew...KNEW! this was not going to be the solution.

Well, the results are as follows.... After I ate the lamb chops, I was overcome with a bone crushing depression and cold spell that lasted for a few hours. I literally sat on the sofa and bummed. Next day I tried the haddock, which sent me into a paroxysm of coughing and the RLS that night was terrible! Yes, the lamb caused the RLS too.

And then the final frontier; my CBC results...when they came back I couldn't believe it; my counts were LOWER than all the time I have been tracking them. Really bad!!! On top of all that, the meats cause me to be terribly short of breath, each time. It too was scary, and it really helped me clarify things.

After all that, I decided to forgo the whole meat thing....except for one last little attempt at eating meat with the skirt steak yesterday. I awoke this morning with 2 blood blisters in my mouth, after a night of dancing around the living room with RLS.

FINAL ANSWER??? My first choice was the right one; becoming a vegan has improved me and my blood counts; maybe small amounts, but I was able to skip a few infusions while I was a strict vegan. I'm back on track again. Proof once again, that you can't argue with success. As for the swollen legs and ankles, I think a combination of the warmer weather and food sensitivities( I'm working on that)is making that happen. We'll see. Thanks for reading.

Sunday, July 3, 2011

I'm Full of Beans ( not!!!)

Sometimes, it's best not to ramble, because if you do and hit the wrong button or what ever I did, your whooole post goes away, never to be seen again! That's what just happened. I don't know what I did, but one second it was there, the next it was gone. Gone, I tell ya! And it was a good post, too.

Maybe I was rambling a bit too much. Let's see if I can remember some of what I was writng about, and condense just a wee bit!

The subject today is beans. Beans are supposedly good for you; all that protein, fiber, b vitamins, what's not to love about beans? In fact, Purines. Uric acid.

All foods contain some purines from what I understand. But, too many purines in the diet create uric acid to form in our bodies, making them acidic. Ever heard of Gout? One of the by-products of an overindulgence or accumulation of uric acid. What foods contain high levels of purines? Animal protein; Fish, beef, pork, poultry...whatever, they all are high in purines. Also dairy products...and beans. How do I know this and why am I writing about beans and purines?

As you know, the reason for this blog is to see if I can improve my condition of MDS with my diet. Notice I don't say cured; it'd be nice if it happened, but I am presently just hoping to improve a little bit. Since my last post I still have no spots on my legs, nor blisters in my mouth, so I must be doing something right...but today I'm gonna write about what I've been doing wrong. And that something involves beans.

Since becoming vegan ( diet only...not a PETA member! ) I have been on the lookout for good protein sources. Months ago, before I embarked on this diet, I ate a high protein diet ( not Atkins; I'm not that stupid!) Lots of beef, turkey, chicken, and take out fish on Fridays. (No, I'm not Catholic, but I always kind of liked the idea of the fish on Friday deal.) I believe the high protein diet contributed to my condition today. And I also believe my low protein diet will help improve it.

With the high protein intake I developed Restless Legs Syndrome. It is when you awake at some point during the night and your legs seem to be doing the cha-cha or whatever they do. They twitch, wiggle, and it often drives one to hop out of bed to walk around for relief. Sometimes, as in my case, it lasts for hours at a time, and I'd get up, walk around, then sit until the twitching forced me to get up and begin walking again. Have I said for hours?

I'm not sure how I got onto the whole purine/uric acid thing, but I found an article about gout, and how it's caused by uric acid from too many purines....in our high protein obsessed diets. I read some other stuff from a guy who goes on for pages and pages about the evils of purines & uric acid. And he listed symptoms from a uric acid overload. That was me! Eureka!

I stopped eating high protein at that point. Within a few days I was sleeping without RLS. That's when I became a vegan. But, there I am a couple of months down the road, and I'm looking to improve the protein in my diet.

Ah! Enter beans. What about beans, I thought, completely forgetting that they can be high in purines, which got me into trouble to begin with. But I thought to myself, a few beans now and then, what could it hurt? I began by making lima bean hummus, and eating refried beans, and making lentil stew. Not too much, but kicking up the protein in my diet was a good thing, I thought.

I had RLS a few nights...a couple more...and then I went in for my most recent CBC count. All the numbers were down. Down? How could that be? They were going up slowly when I behaved myself eating the good stuff and,..wait a minute...weren't beans the good stuff? Protein, fiber, all that? Oh, yeah...it seems I had forgotten about the purines. Purines make uric acid in your body, and it was happening all over again, this time with beans! It had taken a couple of weeks to show up, but uric acid had caused damage again. I determined to stop the beans. It will be interesting to see what my next CBC says...I'll post the numbers next time.

Saturday, June 4, 2011

The Numbers Don't Lie

I have mentioned that I keep a food diary, but I had been keeping it somewhet haphazardly over the last few months. Not anymore. After seeing my CBC counts go up and down, and by comparing them to what I had eaten in the last few days since the last test, I have begun to see a pattern. And, so far, my theory about the fruits n' veggie diet seems to be right on track. When I behave myself ( and more about that later) my counts go up, my leg spots disappear, and I don't get blood blisters in my mouth. When I eat animal protein,sugar, or grains, all my symptoms come back.

Yesterday during my appointment with the doctor, he cozied up to me and told me he finds me 'fascinating.' No, he wasn't flirting with me ( ha ha) he was referring to my most recent CBC count which had my platelets and everything flying higher.
I have tried to approach him with the nutrition angle, but he is a young By-The-Book Dr. and is only comfortable with the drugs and the surgeries. He doesn't want to hear how I can 'manipulate' my cbc counts by eating or not eating offending foods. I plan to wait six months before I present my findings to him. Then it will no longer be 'flukes' whem my blood levels go higher.

Yes, I 'cheat', and only last week I bought a large slice of carrot cake, along with an apple tart from Whole foods, and totally chowed down on them over 2 days' period.In addition, I went out with my son for lunch and had 1/3 of a berry Sangria at Chili's. Oh, yum, but dumb. I was also on antibiotics ( which my dr says makes no difference in a cbc) and my levels were so low, it was weird. But I knew what it was caused from. He poo poos my suggestions, thinking I'm just a poor in denial patient, and any day...any day, he'll see those symptoms come back and I'll be at his mercy. As it is now, he really looks very hard to find something in my mouth and and my legs...I'd almost say he was....disappointed...? When he doesn't find anything.I mean, he's sooo sure he's right and I'm a nut. We'll see.

A friend asked me why I eat those offending foods from time to time. Hey, you who might be reading this... I said I was a vegan, (still a novice,) and I never said it was easy. I need to plan more menus so I don't get caught running out and getting something detrimental to my health. And believe me, those foods I try to avoid are detrimental to my health. Oddly enough, Dana Farber provides snacks of meat sandwiches, and sugary muffins and other pastries with fruity yogurts and sweet juices. Canned fruit cocktail....and bottles of water ( yay for the water) I used to be addicted to their egg salad, but now that I've been trying to go "straight" they are off limits. Honestly, I'm like an alcoholic...going back to a harmful substance...in my case, certain foods. But boy, it is hard. After 60 years...what? just stop eating bread stuffs, meats and sugary desserts? But I press forward the best I can. I really want to get 'better' whatever that may be.

Wednesday, May 25, 2011

You Can't Argue with Success

This last winter here in New England was terrible. Having MDS as well as thyroid problems, I get cold easily. The tons of snow and blowing winds kept me a prisoner in my home for days at a time. I would even skip walking out to the mailbox for three or four days at a time, because I couldn't bear to go out in the cold. I got very depressed, and my beliefs in all I believe in seemed a moot point. Satan had me right where he wanted me; no joy, no looking forward to the future. Man, it was bad.
I suffered from edema, but nobody seemed too concerned about it. It got worse; to the point couldn't bend my knees to get in the car. I let this go on for almost 3 months!
BUT! One day I sort of woke up and came out of the whole mind-wrapped-in-a- cocoon scenario, got in to see the doctor, and within the week's stay I was in the hospital, my lfe got back on track. It helped that spring was starting to show itself too!

Because God had finally gotten my attention, I came home and began to study my bible more. I began to wonder about what I was eating, that may have caused my illness. And then of course, I figured it out with the vegan diet.

Before I continue, I want to explain that when I say the vegan diet, I mean just the diet. I am not a PETA member; I don't throw blood on perfectly nice looking fur coats, I don't berate people I know who eat meat. I am doing this for my body; I want to see what results I get from my experiments. If it turns out that I get better- and that's a word that could mean... better, as in I'm feeling better, all the way to, I'm, all better!( as in 'cured'!) I am looking to improve my health at the very least, and so far, it seems to be working. More about how in my next post. I will leave you with this, however...my dr. says he finds me 'fascinating'...( and that wasn't because he was flirting with me!)

Saturday, May 21, 2011

Nutrition Makes a Stand...Finally

I had been perplexed as to how to handle my nutritional needs. Finally, it hit me...

Duh. The Bible.

I've been babbling all this time how I'm a Christian and a Bible believer, and how I believe the body has amazing recuperative powers, but I also know faith and trust in God help a great deal. I do my part to get better, and God does His part to get me there. After all, He is the Great Physician!

O.K., so how do I do my part in getting better? Not by begging for all those horrible chemicals & drugs which may or may not help me, but by a nutritional point of view.

When I began to study food & nutrition in the Bible, I found that God has a lot to say about how we eat and how we stay healthy. In Genesis, the first book of the Bible, we see that God tells Adam and Eve what their meal plan was.

Genesis 1:29
Then God said, "I give you every seed-bearing plant on the face of the earth and every tree that has fruit with seed in it. They will be yours for food."

In the beginning It looks as if God created us to eat fruits and vegetables. Then when Adam and Eve sinned in the garden, He added this:

Genesis 3:23
Thefore the Lord God sent him forth from the garden of Eden to till the ground from whence he was taken.

That's when I kind of think God introduced grains to our diet.

Then finally, after the flood, God allowed meat into the diet.

Genesis 9:3
Every moving thing that liveth shall be meat for you; even as the green herb have I given you all things.

I think diet and lack of good nutrition contributes to our health problems. God started us out with the perfect diet...but when He introduced those other foods, He also knew there would be illness that came with eating those foods. I have seen the evidence, in my own body as well as others'. I know that when I eat a simple diet ...back to the fruits and veggies...I feel good...and I noticed my blood test numbers go up.
Did you catch that? I keep a food diary and can predict when I'm going to have low blood count numbers. I'm keeping this all quiet right now from the staff at the care center, because they keep telling me the food you put in your body has no relation to your numbers.

More on this in my next post....cause and effect!

A Diagnosis and a Dilemma Develop

I guess you could say I'm a sort of 'modified Christian Scientist', although I am not a member of that church. I am a believer in Christ and the Bible, and the more I study, the more I see we can rely on God for all of our needs, including health.

The Bible never says to not go to a doctor or to seek medical help when needed. Why, I have all sorts of doctors for various conditions! However, I am learning to trust the Great Physcician more and more as I deal with the Myelodsplasia.

One thing I have always believed, is that our bodies want to be healthy. If we give them a chance and the right conditions, I also believe our bodies can repair themselves, for the most part. I'm not talking about a lost limb or something like that: we are not iguanas or lizards, after all! I am talking about illnesses and prevention of them.

Per my 'various conditions' mentoned above, I have begun a nutrition regimen at times. Made bad choices at times, too. One of the worst choices I made was a high protein diet. I wasn't insane enough to go Atkins...but I restricted carbs. I don't think it was so much restricting the carbs, as it was the overload to my body with all that protein and uric acid assaulting my body. That's when things began to happen. Bad things. Red blood cells, white blood cells, platelets...all of them started going down down down. And still I kept up with the silly protein 'bleep'.

Fast forward a year, and I was diagnosed with MDS after a bone marrow biopsy. After the original doctor ( this was even before the first Doctor I mentioned)) suggested a bone marrow stem cell transplant, ( like I would ever agree to that! There's no guarantees with that procedure, anyway ) I decided to think about what I could do to improve my health on my end. This is when I began questioning my high protein diet.

Questioning and changing are two different things. I tried going back to grains along with protein, but the grains bothered me. Or, was it the protein? I wrestled with this whole issue for more than a year...back and forth...and all the while, the numbers went down, down down...

Just recently, I began to study what God says about food & nutrition in the Bible...when all the while I should have started there! Please keep reading.

Thursday, May 19, 2011

The Trouble with Doctors....

Since I have been diagnosed, I have changed doctors 3 times. One Doctor wanted to try me on Pro Crit, but when I had a reaction to it, (mild) He totally discredited my experience and really, sort of went on the 'attack', so to speak. I think he thought I was going to try to sue him or something.( trust me...I have had more interesting medical issues to sue over if I ever wanted to! ha ha ) It was a bizarre confrontation at any rate...and since he told a blatant lie at one point trying to make me see I was imagining the whole thing, I decided it was time to move on.
The next Dr. I tried really wasn't interested when he saw I wasn't interested in any fancy chemo-type drugs, as I told him up front I never would be. I have done my research...for my condition, anything I try chemo/improvement wise, will only possibly help my condition...and probably make my life miserable in the process. After the Procrit experience, no thanks. Sadly, Dr.s don't want to hear they aren't going to make money off you...
Which brings me to my final (so far) Doctor. I actually chose this Doctor because he was nearby. (Dana Farber Institute in Milford) I had been travelling over an hour to the other doctors, and finally decided I really didn't have the energy to go that far every week for blood tests. I live 15 minutes way from the facility. I think I made the right choice!
I have setttled into a routine of sorts, and the doctor I work with has somewhat accepted I don't want any chemo type drugs at any point in my illness, so we have settled on weekly blood transfusions and platelets. Of course, he loves to use scare tactics to try to get me in more often for more frequent transfusions, but I have confronted him about this, and he sort of said...welllll, we just want you to knowwww...
Thanks, you've told me, you've had your nurses tell me, you've had the social worker come in and try to find out why I didn't want serious medical care...I know. I know. But you know what? I am not afraid of what might happen to me. I know I am secure wih Christ...." For to me, to live is Christ, to die is gain" Philippians 1:21 I mean, come on...probably the worst thing you can tell someone is that they are in a potentially critical state, but, yeah... so? That's all ya got?
Don't get me wrong! I want to live! But. I want to live as healthy as I can in my potentially critical state, and that's why no strong crazy drugs will ever be involved. I think they have potential to do more harm than good. The end justifies the means? I don't think so, for me any way.