As I got older I began eating them again in sandwiches or with pancakes while out. At home I bought eggs for mixing in cornbread, pastries, etc. but not for breakfast and certainly never for boiling. Boiled eggs were never my thing.

Strangely enough, just a few months prior to my having an assortment of afflictions back in 2004, I began having cravings for hard/soft boiled eggs. I don’t know why this was. All I know is one day I began craving boiled eggs to the point of actually leaving my home, drove to the nearest grocery store, purchased a dozen eggs and returned home to boil five of them. Never in my life have I craved boil eggs like I did then.

During this period of time I was enduring a good deal of stress. I don’t know if stress had anything to do with my cravings. What I remember is the constant cravings for boiled eggs. I remember eating a boiled egg almost daily before thinking better of it and decided to kick the boiled egg habit about three months prior to being hospitalized in 2005. I thought the health problems I was experiencing had something to do with high cholesterol and yes, my cholesterol was off the charts but was it the egg’s fault?

Since my diagnosis with lupus, I’ve found I still have egg cravings and I’m realizing my egg cravings are always preceded by stress. Is there a correlation here?

The other day I had an egg craving. On Saturday I was stressed because I really wanted to attend a foodie festival at the Rose Bowl. Unfortunately, my leg started annoying me Wednesday night and grew progressively worse by the weekend. I was upset and wanted to do any and everything I could do to rid myself of the pain. Another unfortunate matter was not seeing the entrance fee and the need to purchase tickets prior to the foodie festival. On Friday, while in pain, I tried in vain to get tickets only to find I could not. It was probably a good thing too because on Saturday, I could barely walk on the leg.

I always say everything happens for a reason, my not seeing the event required tickets and the tickets actually cost about $45. I honestly did not need to waste $45 on an event I could not attend so it all worked out for the good. However, I put myself through a good deal of stress though my insistence on having a pity party, “if only I could walk” and “why me?” I hate the “why me” question because the answer always comes back “why not me?”

By stressing out, my only successful accomplishment for the day was putting myself to bed. When I awakened later I wanted and craved a boiled egg. Why an egg? What’s with the eggs? Instead, I made a very healthy dinner of King Salmon, asparagus, baby broccoli and mac and cheese — a little comfort food goes a long way.

Sunday morning, I wanted an egg. Instead, I made pancakes and bacon. Later that day, I wanted an egg. Again, I made something else, stuffed clams, shrimp, collards, and yams.

Monday morning, I wanted an egg. Alright already, I boiled three eggs and ate one of them. Oh joy, was that ever good. It satisfied something within and for the life of me, I don’t know what.

As I am wont to do, I hit the web in search of “egg cravings” and did I find lots of folks craving eggs. Vegans, pregnant women, lots of people craving eggs and wanting to know why they’re craving eggs. There were many reasons offered, choline, iron, B-vitamins, okay, but one site got my attention because it mentioned something I see every month on my blood tests: C-Reactive Protein.

At the World’s Healthiest Foods (also known WHFoods.org), there is a little article on eggs and in it, a section about choline and C-Reactive protein. Every month I get an Anti-dsDNA Antibodies test done and one of the items shown is for C-Reactive Protein, Quant. The reference range for this test is between 0.0 – 4.9. My last test results showed me at 16.9 — mild inflammation. But wait, there’s more.

According to the article at WHFoods.org, eggs provide a nice health benefit in the form of choline. “Although our bodies can produce some choline, we cannot make enough to make up for an inadequate supply in our diets, and choline deficiency can also cause deficiency of another B vitamin critically important for health, folic acid.” The article goes on to state:

People whose diets supplied the highest average intake of choline (found in egg yolk and soybeans), and its metabolite betaine (found naturally in vegetables such as beets and spinach), have levels of inflammatory markers at least 20% lower than subjects with the lowest average intakes, report Greek researchers in the American Journal of Clinical Nutrition (Detopoulou P, Panagiotakos DB, et al.)

Compared to those whose diets contained <250 mg/day of choline, subjects whose diets supplied >310 mg of choline daily had, on average:

* 22% lower concentrations of C-reactive protein
* 26% lower concentrations of interleukin-6
* 6% lower concentrations of tumor necrosis factor alpha

Compared to those consuming <260 mg/day of betaine, subjects whose diets provided >360 mg per day of betaine had, on average:

# 10% lower concentrations of homocysteine
# 19% lower concentrations of C-reactive protein
# 12% lower concentrations of tumor necrosis factor alpha

Each of these markers of chronic inflammation has been linked to a wide range of conditions including heart disease, osteoporosis, cognitive decline and Alzheimer’s, and type-2 diabetes.

I think my body has been trying to tell me something. B-vitamins are good for stress as well as iron which stimulates the flow of oxygen around our bodies in our bloodstream, increasing the flow of oxygen to the brain which can then battle the debilitating effects of stress. Eggs are a good source of iron.

“If the association between choline and betaine and inflammation can be confirmed in studies of other populations, an interesting new dietary approach may be available for reducing chronic diseases associated with inflammation.” — Steven Zeisel, University of North Carolina at Chapel Hill

Perhaps, for those of us who have been craving eggs without a good explanation as to why, it’s probably because our stresses are affecting us in some way. Perhaps there’s inflammation in the body and the body is asking us to please, go out and get an egg. The little soldiers within are screaming “hey, get some choline. We need choline in here!!!”

Think about it, the next time you crave an egg ask yourself are you under stress? Have you been taking or eating foods rich in iron or Vitamin B? If not, the incredible edible egg is one large, easy to prepare, medicinal pill that may cure what might be ailing you, particularly in the way of reducing inflammation.

And as for the wee little argument between E.B. White and the English writer and humorist J.B. Priestley, as an American I do prefer brown eggs because they are, at least to me, closer to nature.

In the video piece, Frazier sits topless, breathing heavy while images in another frame show the billowing smoke stacks from a factory. She says “[t]hat video deals with me in an indirect way speaking about the lupus that I suffer from.”

Her images are poignant and the video brings to our front doors the possibility that where we live (or have lived) could be dangerous to our health. In the book “The Autoimmune Epidemic” the possibility of toxins in our environment or where we live can cause chronic illness in some.

I have a new video that I haven’t released that deals with my mother and me being detoxed by a doctor, going through a cleansing program to see what comes out of the pores of our feet. We both do it, to prove that the area we live in is not safe. But the results are very different. In my case, little specks were floating on top of the water. He told me that it looked like heavy metal, which you might get from not cleaning fruit, and so forth. Then he said, “You didn’t grow up next to the mill, did you?” This is why I have lupus, why I have certain problems. The people that live near the mill have lupus, cancer, and asthma. There’s a high rate of infant mortality. The area was designed for people to live in little homes next to the mill. The mill has made the whole town toxic.

– LaToya Ruby Frazier

It’s powerful and then again, so are her images. If you check out her website above, you will see images from The Notion of Family, three generations of women, her mother, grandmother and herself.

I have always seen her photographic works but I did not know she had incorporated video as well. It is powerful in the sense that while she appears on one side, topless and breathing heavily, we can also see the billowing smoke and hopefully ask “is this why” or “what if?”

Source:

The toe bone connected to the heel bone,
The heel bone connected to the foot bone,
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,

You’ve heard the song above right? Perhaps you’ve heard a variation of the song excluding Ezekiel? Whatever the case, there are many variations of this song. In the above version, the thigh bone is connected to the back bone. In other versions the thigh bone is connected to the hip bone. The truth is the following:

Your pelvis is connected to your femur, your femur is connected to your patella, your patella is connected to your tibia, your tibia is connected to your fibula, your fibula is connected to your tarsal bones, your tarsal bone is connected to your metatarsal bones, your metatarsal bone is connected to your phalanges, your phalanges are connected to…. your toe nails?

The more accurate and funny description above actually comes from WikiAnswers. Although, the “toe nails” portion of it is, well, I dunno. I also learned this while studying with my mother as she prepared for tests while in nursing school. I was probably about 14 then and was fascinated with with the tarsal, metatarsal and phalanges. Perhaps I should have spent more time focusing on the femur and pelvis.

This funny old song came up weeks ago when a friend began singing the song as I was telling her my hip was killing me. Being the kind of goofy person I am, I joined her in song and discovered she knew one version and I, another. I honestly never really paid much attention to the song until we both, while singing off key, began singing our own version of the song. When we got to the thigh bone — the one of interest to me — we parted ways, she with the back bone and me with the hip bone.

A few weeks ago, after experiencing one painful week of walking like Frankenstein, I went in to see my doctor and asked for an x-ray. I wanted to know if the hip pain I had been experiencing, off and on, for about a year now was something more serious than a sprang or a quirk. It was. I was told I have a bone infarct, which means necrosis or bone death in my femur — the one connected to my hip bone. Now I’m in “wait and see” mode because there really isn’t anything anyone can do until I hit osteoarthritis. At that time I will be eligible for hip replacement surgery — oh joy, oh rapture — and I cannot wait to be laid upon some cold table while my hip is turned every which way but loose.

Growing old gracefully — I jest — is a beautiful thing because I have friends who have mastered the art of walking with their arms flailing too. They have either undergone some form of replacement surgery or will undergo surgery soon. We love getting together over coffee to cuss and discuss our war wounds. Truly, at this age we do talk about everything under the sun (and moon). I am the only one with lupus, however, some of us do have a common denominator, steroids, also known as the dreaded prednisone.

In the few weeks since learning of my bone infarct — which should not be confused with the German word ausfahrt, or depart, which is wishful thinking on my part — I have learned about posterior versus anterior hip replacement and I’ve seen some very graphic YouTube videos of both. Again, oh joy, oh rapture. To think I have that to look forward to at some point in my life leaves me delighted beyond comprehension. Again, I jest.

Unfortunately, with or without the prednisone, those of us with Lupus SLE can expect necrosis, osteoarthritis, bone infarcts, etc., because it is the nature of the beast. In my case, my doctors believe this was caused by the prednisone.

Of course, being the anal retentive soul I am, I had to research this and, on eMedicine, I found some interesting tidbits of information for the causes of necroisis. They are:

Causes of osteonecrosis

Causes of osteonecrosis and associated conditions include the following:

* Trauma
* Idiopathic causes such as Legg-Calvé-Perthes disease
* Renal transplantation
* Increase in endogenous steroid levels, as in patients with Cushing syndrome
* Collagen vascular disorders such as systemic lupus erythematosus (SLE), rheumatoid arthritis, and scleroderma
* Hemoglobinopathies such as sickle cell disease and thalassemia
* Hemophilia
* Gaucher disease, Fabry disease
* Infection
* Pancreatitis
* Pregnancy
* Gout and hyperuricemia
* Diabetes
* Use of immunosuppressants and other drugs such as exogenous steroids, indomethacin, and phenylbutazone
* Alcohol use
* Dysbaric osteonecrosis
* Radiation therapy
* Arteritis

Well ain’t I fit to be tied. Who knew diabetes, pregnancy and pancreatitis would be on this list? Of course there is you just plain got old and stuff just broke down in dem dry old bones.

Researching these things to the point of becoming obsessive keeps me from being fearful and makes me fearless. When my doctor first said the word “collapse”, my imagination did run wild, to the point of seeing myself lying upon concrete floor unable to move. It ain’t necessarily so but oh my, didn’t my vivid imagination take me places where angels fear to tread.

Truth is, though this is a very painful condition when active, I have yet to hit the ground. If you are experiencing a sharp pain in your hip or knees, if the pain causes you to turn a foot inward or walk with your leg extended, if you walk leaning over to one side, and if the pain — in my case — seems to come and go, invest in a cane please. Do not put yourself through unnecessary pain or further damage. I have a cane and I will walk with it with or without pain. I do so to eliminate pressure on my hip. I will grant you it took me some time to learn how to walk with it in my left hand but, eventually, I learned.

Secondly, don’t do what I did. I let this thing go on for over a year before talking with my doctor and getting an x-ray. Bad move on my part. Time is of the essence. The more you know the better and the sooner you can begin work, i.e., a cane, exercise (non weight bearing exercises I might add), etc.

In an earlier post I pointed out I’m somewhat of a hard-ass (pardon mon fracais) because I don’t like taking pain meds. This weekend I had pain so great I had to pop a pill. It did not take the pain away completely but it did take it down enough so I could cook and I need to cook.

Calcium? Yes, I do take calcium but I will admit not as religiously as I should.

Sooooo, in conclusion, dem bones, dem bones, dem dry bones can keep you awake at night, cause you to walk like Frankenstein with arms flailing, have you learning a new sidestep as you walk through your house, and wincing becomes a huge part of your vocabulary. But — and I mean big butt because you’ll need that muscle too — you will get through it. I find myself laughing about it because I do find it amusing, the woman who used to wear 14 inch heels — again, I jest. Don’t allow it to bring you down and if you must, have a tiny pity party and move on. Be proactive and laugh about it. Laughing is the best medicine and will get you through the bad times. Trust me on that one. It’s cheap, does not require a prescription and is quite easy to do, if you allow it.

I will see an orthopedic surgeon soon and will probably have an MRI. I cannot wait for that party.

In recent weeks, I have heard about numerous cases of Shingles and honestly, I thought there was an epidemic spreading throughout the city. Oh my God, everyone is coming down with Shingles. First my mother, then a co-worker, a clerk at the doctor’s office, then this one and that one and before long there were too many to count.

I always thought Shingles was something that happened to older folks, you know, people in their 60s or 70s. I’m now learning it can happen to anyone at any time. Though it is true the virus affects people over 60 (some say 50), it typically occurs in those who have had chickenpox. If you have had chickenpox, the virus never leaves the system. Actually, the virus continues to live in your nervous system where it “sleeps” (is dormant) in the nerve roots. For some, the virus can remain dormant forever. For others, a weakened immune system can cause the virus to awaken, reproduce, and travel along the path of the nerve fiber to the skin’s surface, resulting in shingles. If the virus becomes active again, it can only cause shingles, not chickenpox.

I have never had chickenpox. I don’t know how I missed the fun but I did. Unfortunately, according to research on WebMD and other sites, I learned that a person with Shingles can infect me. A person with a shingles rash can spread chickenpox to another person who hasn’t had chickenpox and who hasn’t gotten the chickenpox vaccine. Surprise, surprise, as if I don’t have enough to worry about.

Who gets shingles?

Anyone who has had chickenpox can get shingles. You have a greater chance of getting shingles if you:1

* Are older than 50.
* Have an autoimmune disease that causes your immune system to attack your body’s own tissues.
* Have another health problem or stress that weakens the immune system.

If you have never had chickenpox and have not gotten the chickenpox vaccine, avoid touching someone who has shingles or chickenpox. If you are at least 60 years old, you can get a vaccine that may prevent shingles or make it less painful if you do get it.

Another site that provided a wealth of information is ShinglesInfo.com. This site has information and video (along with graphic photographs) on Shingles. On this site I learned Shingles can attack any part of the body. For two people I know, the virus started with their eye and moved across their forehead and there now is concern for their vision. Others can experience long term nerve damage. I never knew the severity of this viral infection.

The one thing that repeatedly came up on the many sites and books I’ve read on Shingles was stress. It appears stress is truly the root of all of the evil that can come from within. Relax, count to ten, think again, it ain’t that serious. I have heard this is a very painful experience, one that I would not wish on my worse enemy. It ain’t worth it.

Admittedly, I was ignorant. I had no idea what Shingles was, what it did to people and I certainly had no idea a person with shingles can affect the health of those who have not had chickenpox. I have heard stories of folks working around kids, patients, etc., who, unknowingly, infected others. In my case, with a weakened immune system thanks to lupus, God only knows what I could end up with besides Chickenpox. I’m a Petri dish waiting to happen. From WebMD:

Avoid contact with people until the rash heals. While you have shingles, you can spread chickenpox to people who have never had chickenpox and who haven’t gotten the chickenpox vaccine. Be extra careful to avoid people with weak immune systems and pregnant women and babies who have never had chickenpox and have never gotten the vaccine.

I have heard chickenpox can cause sterility in adult males. So far, I have not seen this mentioned on any of the medical sites I’ve visited. However, on MedicineNet.com, regarding chickenpox, I did read the following:

Especially serious complications can occur in patients with AIDS, lupus, leukemia, and cancer. Complications also occur in people taking immune-suppressing drugs, such as cortisone-related medications. Newborn infants whose mothers have chickenpox in the last trimester of pregnancy are at increased risk from the disease. If the mother develops the disease from five days before to two days after delivery, the fatality rate for the baby is up to 30%.

So, for those who have or have had shingles, though you are not contagious to many — those who have had chickenpox — you are contagious to those of us who have not had chickenpox, people with autoimmune diseases, and those undergoing chemotherapy or have weakened immune systems. You could also be contagious for a period of two weeks or more.

Shingles is contagious to people who have not previously had chickenpox, as long as there are new blisters forming and old blisters healing. Similar to chickenpox, the time prior to healing or crusting of the blisters is the contagious stage of shingles. Once all of the blisters are crusted over, the virus can no longer be spread and shingles is no longer contagious.

Who knew? I didn’t.

I have been away for a bit because of a ginormous project but, it is done and now I’m back. Unfortunately, while on that ginormous project I forgot about the site. Well, as you can see it too is back.

Much has happened since I’ve been away and I’ll fill you in later but keep these few things in mind: shingles, Lupus Now, and the thigh bone connected to the hip bone. There’s a funny story in the last one.

Over the weekend I finally figured out how to add articles from here to Facebook. Admittedly, social media ain’t my shtick (probably because I’m more antisocial than social — aka loner) but, after a little time, patience and a few glasses of wine — well one — I figured out where to go on Facebook to make it happen.

In the meantime, I’m doing well. It seems the chemotherapy may have worked in my case. I still don’t know if my dose was high or low but, after nine treatments of Afternoon Chemo Tea, the kids are doing well. My nephrologist gave me a very good report recently; protein is now down to about 200, a far cry from 7,000 to 8,000. The only bad report: phosphorous was high. Me thinks this is due in large part to discovering I can make a pretty darn good homemade three-cheese veggie pizza. Stand back woman, stand back.

I have also made a triumphant return to the gym. I am now up to 30 minutes on the elliptical (target: 45), I’m back on the bike and treadmill, and I’ve dusted off my weight stack here at home. The prednisone caught up with me and I’m working to get ahead of it because my face — particularly the cheeks — went crazy storing prednisone. My first day in the gym caused a good deal of it to pour off. I love it, I’m addicted, and I want my cheeks back!!

in a few days — or sooner — I’ll post new articles so, sit back, bait your hooks, drop your poles in the water — or start casting — the fishing is good, we’ve got some Big Mouth Bass coming our way followed by a few Rainbow Trout. I’ll see you soon.

Knowing the magazine is out, I went to their website to see a most informative article about the importance of sleep. Oh yes. The article “Sleep Easy – Why Sleep Is Critical When You Have Lupus” tells the story of Karen Avery, a mother and managing director for Marsh & McLennan Companies. She has lupus, her brother has discoid lupus and she lost a cousin to lupus three years ago. Her cousin was 45.

Avery talks about the difficulty she has had sleeping. Additionally, like I used to be, she too did not eat right, did not exercise and as she put it “I was running myself into the ground.” Though she has managed the disease well, she has been hospitalized four times since 1989, when she was first diagnosed, with lupus flares. She believes every flare was caused by a significant and prolonged lack of sleep. For her, getting the right amount of sleep is essential. Amen.

The article goes on to talk about sleep deprivation and its effects on the immune system. It is a must read article for those of us who are Type A personalities and need to slow down if we are going to survive this disease and its harmful effects. Great article.

You can read the online edition of Lupus Now here or subscribe and you too can read some very good articles on Lupus, including clinical trials.

Lupus LA has the article posted on their site along with a write-up on how Shante (Snoop’s wife) has made Lupus LA her charity cause. In fact, the article goes on to say:

Shante and husband Snoop Dogg joined nearly 600 others at May’s Lupus LA Orange Ball. Just by being there, they elevated the stature of the event and increased media attention to the cause.

In July 2010, Shante officially joined the Board of Directors of Lupus LA.

I love it and geez, what am I waiting for? I need to get involved myself. Thank you Lupus LA for drawing attention to this great article in People. You can download a PDF copy of the People Magazine article from the Lupus LA site. Look to the right and you’ll see the photo above. Click the link and it will load the article.

Since my diagnosis, I’ve been curious about stress and how it affects those of us with lupus. Unfortunately, I have first hand experience with flares resulting from stress and will do whatever I can to reduce stress in my life. At times this means appearing uncaring, aloof, and some have said I’m often too calm to be real. The truth is I refuse to get caught up in other people’s drama and as cold as it may sound, I also refuse to associate or have dealings with individuals who are just too negative for words. I have learned my lessons from past mistakes.

In the years prior to my diagnosis, stress was something I thrived on. I loved it, I ate it up and asked for more. Why? Because of the excitement, the thrill of the game. Tell me I have four hours to do something and I will meet or exceed expectation. It was all a game to me and perhaps I did my body more damage and harm than good. Sure, you can rest when you’re dead but, in my case, when I saw death’s door ajar while in the hospital, I realized I didn’t want to die that soon and reorganized my life to rest now, smell the flowers, enjoy life and when death comes I will have no regrets. The worse thing you can do is have regrets while on your death bed.

Unfortunately, there is no way to eliminate stress from our lives. As with those of us with lupus and those with healthy immune systems, stress can be a killer.

In an earlier post, I linked to a story on CNN regarding caregiving and how being a caregiver can make you sick. It’s the stress involved with caregiving that will do it. As a caregiver you will have sleepless nights or interrupted sleep, you will spend hours on the road, in traffic, trying to get to the hospital in a timely fashion, and you may find yourself eating catch as catch can. None of it is good for you. Then comes worry. You will worry about things you cannot control — doctors who appear cold and heartless, carelessness on the part of hospital staff, people lacking empathy, and friends/family who believe you are not doing enough — all are out of your control. You are not a machine, you are human with real blood running through your body. As such, you must forgive yourself everyday for being human and move on always striving to be the best you can be under the circumstances.

In work, if you are doing what I initially did — believed I could continue to operate at the same level I did prior to my disease — you are doing more harm than good. I did not realize early on that prednisone, a necessary evil, shuts down your adrenals meaning no fight or flight. On a high dose of prednisone I was hyper and felt I could build Trump Towers in a day. The hyperactivity was accompanied by a good deal of perspiration and 1,000 birds flying around in my head. Basically, though I was hyper, I had a hard time focusing and/or concentrating. This was not only frustrating, it was also very stressful. Tasks I once did effortlessly were hard to do and problem solving, something I could do in minutes, turned into days because of the birds flying around in my head. I will also add reading and comprehension goes out of the window. You need both to do anything well but, while on a high dose of prednisone you can read it but it may take you a while to understand what you just read.

When the doctors reduced my intake of prednisone, the 1,000 birds lessened, this is true, but in came depression, stiffness, pain, fatigue and a whole assortment of other problems. The difficulty I had when the prednisone was reduced was seeing a stressful situation walk through the door and having no cranking power to get my body moving to greet it. This was also quite stressful for me because in my past life, I would have been at the door before stress had a chance to enter. I cannot do that now.

Through I would love to drop prednisone, I cannot unless I want to fall head first down a slippery slope toward Addison’s disease. My adrenal glands have been on vacation for five years, I cannot take that chance.

Considering the medication I’ve been on and my past life experiences, lupus (and prednisone) have taught me to take it easy. Sometimes things happen for a reason. Now, I enjoy the hummingbirds that buzz me occasionally. In the past, I ignored them. Today, when a hummingbird buzzes me I stop what I’m doing and talk to them. A funny story, the day I left the hospital I went into my backyard and was buzzed by about six or more hummingbirds. They had me crying big crocodile tears and I found myself saying aloud “I missed you too.” Those hummingbirds taught me something that day. I like making money, I like traveling, I like moving and doing but, the best things in life are free. I now do whatever I can to live a stress free life.

Emedicine online has an article entitled Does Stress Affect Lupus? I appreciated the details in the article, particularly that stress affects healthy folks as well. However, the following paragraph states the damaging effects of stress could cause flares for those of us with lupus.

If a person already has lupus, can stress actually cause a flare up of the disease?

Speaking on behalf of my fellow rheumatologists (lupus experts), the answer is undeniably “Yes.” Again, stress may not cause any problems for any individual patient. However, it is believed that stress not only can cause fatigue and a general lack of well-being, but it can also cause a flare up (reactivation) of the lupus. This typically means that features of the lupus, including fatigue, muscle and joint aching and stiffness, fevers, and blood test abnormalities can worsen. Stress can also have indirect effects on lupus disease. For example, it is known that women with systemic lupus not infrequently experience a worsening of symptoms prior to their menstrual periods. (This phenomenon, together with the female predominance among those with the disease, again suggests that female hormones play an integral role in the clinical characteristics or expression of systemic lupus.)

Moreover, at the 2001 Annual Scientific Meeting Of The American College Of Rheumatology, it was reported by researchers that stress reduction improved certain measures of lupus disease activity. As a matter of fact, based on their experience with a variety of patients, doctors who treat lupus have long accepted this concept of a relationship between stress and lupus.

Emphasis added.

Removing negative thought, negative people — particularly those I call toxic vampires — and negative situations from your life can be beneficial as well.

I have had to remove a crap load of negative people from my life and I’ve removed myself from toxic situations. I am always reminded of a prayer I made many years ago where God gave me Caleb as a mentor. The story of Caleb is an interesting one because, basically, Caleb believed in spite of all of the negative thoughts of those with him. He believed if God is with us we can conquer. Caleb saw the positive, had a “can do” attitude, and was not swayed by the negative thoughts and, unfortunately, actions of those around him. Again, basically, all of the negative thinking had to die off in the desert for 40 years and the descendants of those negative folks entered the Promised Land. Caleb and Joshua were the only two of the original group who entered and saw the Promised Land and, I’m sorry, the negative thoughts and actions didn’t go with them. A powerful lesson.

A blog I enjoy reading is that of a lupus frat brother, Daniel Beck, and his blog is Leaving Lupus. One article he posted dealt with negative thinking and lupus with a link to another post on Managing Lupus Stress More Effectively by Changing Your Thoughts and Actions. I love this article because it goes to the heart of negative thoughts and actions and how to change these thoughts. It starts:

People with lupus often have recurring negative thoughts, such as:

“This illness will never go away;”
“Flares will cause complications or even kill me;”
“People will reject/abandon me;”
“I won’t be able to take care of myself;”and
“I can’t” (fill in the blank, e.g. I can’t do my job anymore or go on a trip or lift the laundry, etc.).

These negative thoughts can affect behavior and cause negative feedback loops. For example, fear of being dependent may prevent you from accepting needed and offered assistance from people who love you. This causes you to have feelings of isolation that your behavior – not the disease – caused. Or fear of not being able to climb a hill leads you to not going on a trip that you would really enjoy – even if you have to sit out the part where others climb a hill. Or fear of being rejected leads you to put up a wall so that you don’t give relationships a chance.

Getting rid of negative feedback loops is very important. Before prednisone I was big on my looks. Not anymore. Right now I’m just glad to be alive, forget about looks. The hummingbirds still love me, my dogs love me and my mother loves me. I have good friends who give unconditional love. Sure, there are those who don’t understand my tummy fat and fat cheeks are due to prednisone. There are those who will offer no respect to me because I look funny to them and guess what, I don’t care. That’s their problem. There are a lot of shallow people out there, not my problem. I truly believe what has kept me going for so long is deciding against negative thoughts relating to this disease — admittedly, this took some time — and taking nothing seriously, not myself, not lupus, nothing. I have learned to laugh through most of it.

Oh sure, I was on the floor for a while with “I will never be able to wear heels again” — because of my leg — “I will never be able to hike again”, “I will never dance again”, oh my God, the depression was too great and I was doing a bad Shakespearean play in my living room, oh “to die: to sleep; No more.” Finally, I got enough of that because, in spite of everything, I was not dead, or dying, so I thought it best I learn how to live with lupus. I made lemonade, something I’m good at, and moved on and trust me, it was not easy.

I learned my negative thoughts and actions became “negative feedback loops”. The more I repeated these thoughts and deeds the more they would manifest in my life. It’s like faith, if you believe it you will receive it, which means it behooves you to think positive thoughts and like Caleb, believe the good in spite of all you see around you, including giants.

So, bottom line, eliminate stress from your life as best as you can. Take time for yourself and live in the here and now. You may feel you cannot plan anything because you never know where or what condition you’ll be in later. So what, spontaneity is the spice of life. Feel good one weekend? Hop a plane or train and go somewhere. And, if you’re thinking positive thoughts, you might find great deals come your way allowing you to take that spontaneous trip. It has certainly happened to me.

Think positive thoughts. There is some truth to the law of attraction though I’m not quite in favor of how some have marketed this. As you believe, so shall you receive. Think negative and you’ll attract negative. Conversely, think positive and you’ll receive positive. Sometimes it is all in the way you perceive things. If I awaken in the morning with leg pain I will make a joke of it. I’ll call myself Ms. Peg Leg, grab my cane and off I go. Fear rejection? Don’t because there is enough in life that will cause rejection without lupus — the color of your skin, your sex, your weight, your religion — lupus is one more thing for folks to use as an excuse to not like you or to stay away from you. There are some folks out there who simply cannot take illness. Move on. It also may mean, particularly if they are friends of yours, you need to do some housecleaning. Ever think about that?

Instead, irrespective of time, I take time to prepare meals because I like knowing what’s in my food and I want to ensure I have a good day in terms of health. Admittedly, some things have slipped by me and I’ve paid dearly for the error but, diligence is key and now I make sure I have my glasses with me while shopping so I can see and read what I’m picking up.

I have friends who tell me they have no time to cook or “it’s too hot to cook”. When I ask about the alternatives I often hear they eat salads from McDonald’s as if that’s a mighty fine thing to do. Sure, a salad is great but what’s in it? When I looked at the average McD’s salad, it seems meat in the salad causes an increase in sodium. The plain salad is fine but add bacon, grilled chicken or crunchy chicken and you’ll get between 300 mg sodium to over 1000 mg of sodium. If you think the balsamic vinaigrette is better, think again. The Newman’s Own® Light Balsamic Vinaigrette contains 950 mg of sodium. So, get the crunchy chicken salad and add the balsamic vinaigrette dressing and you’ve got a sodium salad.

Some will say you need to limit your sodium intake to about 2500 mg per day while others say 1500. I try to keep my sodium intake to about 1000 to 1500. I use a lot of Mrs. Dash (without MSG) and lemon juice which usually satisfies my salt cravings. I will also set aside time during the week (typically on the weekend) to prepare my meals for the week.

With that, I’ll start with one food I try to have as often as I can, which usually translates to almost every day of the week. I love fish, always have and probably always will. What I hate about the Gulf Oil spill now is how I will miss Nawleans shrimp. Shrimp from the Gulf has a distinct taste and I love it. Red Snapper from the Gulf is also so, so delicious. Alas, and unfortunately, they are soaking up oil and fish mixed with crude oil and dispersants does not sound appetizing. No thank you.

Living in the San Gabriel Valley has taken me far from my favorite fish store, Santa Monica Seafood. Without that market, I’ve searched high and low for good fish and what a disappointment. I love Red Snapper and out here people sell something called Pacific Red Snapper that tastes nothing like Red Snapper. Actually, Pacific Red Snapper is nothing more than Red Rockfish, a big difference. Real Red Snapper should be firm with a sweet nutty taste. When cooked, it has a pleasant, nutty aroma. I purchased what was labeled Pacific Red Snapper from both Costco and Whole Foods and the fish tasted like cotton. No sweet nutty taste and it smelled like nothing when cooked. NOT the Red Snapper I was looking for.

Finally, someone turned me on to Fish King in Glendale and there I found real Red Snapper, both whole and filleted and as an aside, if you buy the whole fish you will see the red eyes, that’s Red Snapper. There I can buy the whole fish and have them clean and fillet the fish. As soon as I smelled the fish cooking I knew I found a true fish market, one I can rely on for real Red Snapper.

Red Snapper

Red Snapper, like most fish, is high in protein, low in saturated fat and a unique source of extremely beneficial compounds called omega-3 essential fatty acids. Red Snapper is an excellent source of vitamin B12 — one 4-ounce serving provided 66.2% of the daily value — and it is a good source of vitamin B6 — the same 4-ounces will supply 26.0% of the DV for B6.

Omega-3 essential fatty acids have been the subject of intensive study by researchers. The omega-3 fatty acids found in snapper have a broad array of health benefits. Omega-3s help prevent erratic heart rhythms. These fatty acids in fish also make blood less likely to clot inside arteries (which is the ultimate cause of most heart attacks and strokes). Omega-3s improve the ratio of good cholesterol to bad cholesterol. And finally, by reducing inflammation, these essential fats play a role in preventing cholesterol from clogging arteries.

I’ll add something else, eating a diet rich in Omega-3-improves mood and reduces depression.

Lake Superior Whitefish

My favorite fish in the world!!! Okay, enough of my fawning over this fish but it is sooooo good and soooo hard to find in SoCal unless you go to Santa Monica Seafood and, hooray, Fish King in Glendale. I had a field day during the month of June because Lake Superior Whitefish was on sale. Oh joy, oh rapture.

Again, Lake Superior Whitefish (LSWF), which also has a very distinctive, delicious taste, is full of Omega-3. One 3-oz. serving of LSWF contains Omega-3 fatty acids, about .35g of EPA and 1.03g of DHA, to be exact. That’s more than pink and sockeye salmon. I will also add supportive but not conclusive research shows that consumption of EPA and DHA omega-3 fatty acids may reduce the risk of coronary heart disease.

Many believe only salt water fish contain significant levels of Omega-3 fatty acids. This is not true. Freshwater fish from cold northern waters, like Lake Superior, can have significant levels as well (Want et al. 1990). In fact, a study during the ’90s showed Lake Superior fish came out ahead of chinook salmon. Something to consider.

Not all white fish is created equal and for taste, Lake Superior Whitefish beats them all — in my opinion — hands down. I have it every week.

Salmon

I do not eat farm raised salmon. Actually, I do not eat Atlantic salmon. The only salmon I like is Pacific or Wild Alaskan, Chinook, Coho or King salmon (if I can get some good King which is usually expensive). Just thinking about something raised in cramped environs causes me stress.

Salmon is full of Omega-3 fatty acids and again, a great anti-inflammatory food.

Bottom line, eat fish. It’s good for you and don’t load it down with unnecessary seasonings. Saute it in ghee and add some Mrs. Dash. Taste the fish and enjoy it, you’ll be glad you did.

Before I really get into this post I want to do a disclaimer. This post could be labeled T.M.I. for Too Much Information but I have to do it order to help explain how my change in diet has helped me.

Last April I was at Hotel Huntington about to undergo my second kidney biopsy. It was not pleasant. I have difficulty with some drugs that are supposed to reduce pain and discomfort. What the nursing staff ended up doing with me was pump me full of stuff and then they carried a needle, locked and loaded, just in case I needed more. My blood pressure and heart rate jumped all over the place that day. That weekend, while recuperating, I did some soul searching and asked myself how much more of this can you stand?

In May, I was started on oral Cytoxan. At that time I had severe edema, ended up with some sort of cold or flu, and was generally just out of sorts. It was during this time, just prior to going on IV Cytoxan, that I decided it was time to be proactive. I changed my diet, along with a few other things in my life, more on that later.

The Importance of A Good Diet

When all of this began in 2005, I changed my diet then as well. I was put on a renal diet which, to be honest, put my body in check. I had a very good outcome. I was placed on oral Cytoxan which I took from April to September of that year. For the next four months, still keeping with my diet, I did well. It was not until January of the next year that I started having problems again and I believe it was due in large part to my returning to old eating habits, particularly fried fish, beef, pizzas, and fast food. At that point I was put on CellCept and throughout that time I continued to eat all of the wrong things until CellCept failed me. After CellCept, I was placed on Cyclosporine and again, I continued to eat what I wanted to eat without considering the consequences of my actions.

Quite frankly, I was obstinate. I wanted to believe this whole thing would eventually blow over. I wanted to believe this was all a mistake or a bad dream. I did not want to believe I was suffering with a serious illness thus, I acted as if nothing happened. Thoughts of that bland, tasteless diet haunted me and I did not want to believe I needed to eat like that for the rest of my life. I just did not want to accept the fact I did well while on that diet.

Okay, here comes the TMI part. I will admit, while on that diet and on those hit/miss days I decided to eat well, I had good urine output. It was actually quite surprising to me that on the days I ate well my body equally responded well. However, on the days I ate bad food my body locked up on me like a bad dream and my blood pressure was unstable. More importantly, and here’s some more TMI, because I was so obstinate about eating right, I ended up with weeping legs, meaning, my lymphatic system began leaking through the skin of my legs. Not good. That definitely woke me up and I made a quick turnaround in mindset.

The Importance of Rest

Rest is equally important. I’m a Type A personality and rest is not my forte. I have always had a problem sleeping. I think it’s in my DNA or something because sleep has always been elusive (averaging about 2-4 hours sleep a night) and I was never one for naps. I was always repairing or setting up computers at all hours of the day or night, fixing software problems, answering questions, working on databases, name it I did it and often at all hours. I would stay up late and within a couple of hours I was up again in time to catch the phone for east coast clients. I was a workaholic.

When I was diagnosed in 2005, keeping those hours got harder and harder because of prednisone. Prednisone severely interrupted my sleep pattern, which wasn’t good to begin with. At that point I had difficulty getting any sleep and often I found myself up 24-hours due to my work. I also had horrible crash days when I just couldn’t get myself out of bed.

Thankfully, those 80mg of prednisone days are over, however, the crash that comes from reducing the drug is equally devastating. It took a long time for me to recover from the reduction and what resulted was overwhelming fatigue. I could no longer keep the hours I used to work and as a result, I have had to limit the amount of work I do — particularly video editing — to a minimum. Perhaps that was a good thing because my hours were brutal but, in the interim, I realized the importance of rest and the healing that comes from getting at least 6-8 hours of sleep a night. Now, I also take naps.

Now, more TMI. With rest, I have noticed I do not retain as much fluid in my body. That’s a good thing. When I eat well and get enough rest, I don’t retain water and I don’t need diuretics. However, when I cheat my diet and put too much on myself in terms of work (i.e., stress), my body locks up. When I did not get enough rest and did not eat well for an extended period of time, I became bloated, gained excess weight and no amount of diuretics would work. It is at that point when I entered the danger zone.

When I went on IV Cytoxan last year, I changed my diet and sleeping habits. During this time I did not have many bad moments. I do keep a food journal and can point out problems directly related to the foods I ate and/or lack of sleep. I can pinpoint what or where I ate and, within a day or two, tell you what horrible outcome I had as a result.

Water, The Stuff of Gods

While I’m at it, I have to talk about water. I was never a big water drinker. I think I took on the W.C. Fields philosophy that I didn’t drink water because of what fish do in it. Well, perhaps not, but I did find I would drink anything but water including sodas — or what we called pops in Chicago. Now, I drink a lot of water and curiously, I’ve found drinking tap water causes my body to lock up as well. For whatever reason, I don’t care how much I filter it, I cannot drink tap water. I keep saying I’m going to test the water from my faucet to see what’s in it but I haven’t done it. I do plan on it because I want to know what’s in that stuff. I know this is a superfund site and a friend told me not to drink the water and don’t serve it to my dogs, but I just gotta know what’s in it.

That said, I no longer use tap water for cooking or for ice. I use bottled water now and so far I’ve had none of the problems I used to have drinking tap water. I don’t know why, I don’t know what’s in it, I just don’t trust it anymore. I do, however, drink a lot of water. Plain water is the best stuff in the world.

Bottom Line

I should have been eating right all along but, being human, I didn’t. I had to wait until I became ill to realize I am what I eat, that rest is important for the body to heal, and water is a necessary evil. Exercise is equally important as it helps to reduce stress.

In 2006, when my kidneys called in unhappy, I had been off chemo for four months. Currently, I’ve been two months off chemo and I have three months to go before knowing if diet, sleep and exercise has truly helped. To be honest, I feel better today than I did in late 2005 when I came off oral Cytoxan. Then, I had extreme fatigue and I was in lots of pain. Hopefully, the chemo helped this time and perhaps I helped with the chemo by paying attention to my body and what I put in it. During the chemo I had no infections, no thrust, no nausea or vomiting (well, I did have one occurrence of nausea), and none of the short-term side-effects I was told I might experience. I feel blessed or lucky.

Keeping a daily health journal has been beneficial. I can look at the times I cheated my diet and see, often within a day or two, how what I ate affected me. I suggest you do the same, make note of what you eat, keep tabs on how many hours of sleep you get a night and note how you feel. Check it often to see if there are relationships, i.e., I had a bad day and I ate pizza from XYZ Pizzeria two days ago. You might see some surprising details emerge from your journal.