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.

First, my Afternoon Teas are over. After 10 chemo treatments my doctors called the whole thing off one day prior to my 11th chemo treatment. I was overjoyed.

I will admit the rise of concern when at my last treatment the doctor there warned me that too many treatments could swiftly bring on other side effects. I raised my concern with one of my doctors who then said he would talk with the other doctor. Well, collaborative care — when two or more doctors are involved — can sometimes turn into a different form of living hell when you discover they really are not talking with one another.

After voicing my frustrations they did finally talk and came to the conclusion that it was time for me to end the treatments and move on to something else, if needed. Fortunately, the protein spill reduced substantially but not enough to say I’m out of the woods.

Having dealt with this for so long, I believe I have settled into the realization my kidneys are damaged and I may end up with CKD at some point. I am no spring chicken. As a young person, I knew something was not quite right with my body. For many years I said I was born a lemon and as such, I will just make lemonade. I also did not believe I would live to see 50. Well I have and anything over 50 is gravy to me. Being realistic, I’m not going to live forever — nothing lasts forever.

What I did not know about chemo — because no one really tells you what to expect while on the stuff — is it makes you swell. I had no idea. I puffed up something awful and had no idea Cytoxan (along with prednisone) turned me into Ms. Water Retention 2010. Like I didn’t have enough to deal with. Since I’ve been off the stuff I’ve noticed a difference, weight loss.

At first I found the weight loss shocking — so much weight in such a short period of time. I then noticed my face was not so puffy. What the heck? So I looked it up and found on Chemocare.com that swelling is a side-effect of chemotherapy. Who knew?

Thankfully, the overwhelming fatigue I experienced shortly after chemo is over. I am hoping to finish some of the projects I started but could not finish because of fatigue and pain. I have also learned keeping my potassium up is a never ending battle.

During chemo — again, not knowing it caused swelling — I had to take diuretics every now and then to fight edema. The potassium pills my doctor prescribed weren’t quite doing it for me because I could not get those horse pills down. Well, I complained and my doctor prescribed 14 gallon jugs of potassium. Okay, that’s an over exaggeration but I did carry out what felt like jugs of liquid potassium from the pharmacy. This has worked out beautifully because I now add the potassium to my daily veggie juice or fruit smoothies and voila, life is good and the pain I experienced as a result of low potassium has lessened. Hooray!

In terms of my diet, it’s getting better. As much as I am tempted to eat fatty foods — fast food, eating out, etc. — I find I feel so much better when I cook my meals. When I do eat out, I tend to go for the salad bar and I, shamelessly, take my own homemade dijon balsamic salad dressing. A better dining experience for sure. I have also cut out, completely, rich foods. As much as I love gravies made with port, sherry, and wines, I had to give them up. Teary-eyed, I had to throw out all of my cooking wines.

So, in sum, chemo is done and we’ll see what’s next on the menu for me. I’ll give it a few months to see if 10 months of chemo pushed me into remission. I hope so but we’ll see. For now, I’m happy it’s over and will enjoy as many good days as I can.

I will admit, prior to my diagnosis I ran from pillar to post staying busy. I would listen to my body only when I found myself in an acute situation. Prior to that there were pills (typically ibuprofen) that always quieted my pain. Now, I cannot and will not take pain meds unless it is absolutely necessary and even then I’ll question whether I should or should not. It is now imperative I listen to my body, watch what I eat, ensure I drink plenty of water and in this way I can pretty much maintain a drama free — or close to drama free — existence.

There is a little saying I live by and it is “what you don’t understand you fear and what you fear you attack.” With lupus, stress is the enemy. I now must do all I can to eliminate or manage the amount of stress in my life and to do that, practicing calm is important.

For instance, pre-lupus, if I felt put upon or was given a job I really did not want to do, I would immediately go into ruckem suckem, frickem frackem mode. Now, post-lupus, I have to watch that little destructive mode because invariably it will lead to a flare. Instead, I do what the kids call “flipping the script” and if I feel in any way that I am being put upon, I will just say NO. Yes, I have learned to say no and I love it.  The word is necessary for my survival. If I am assigned a task I really don’t want to do but need to do, I have learned to change my mind and become more proactive. Instead of ruckem suckem, frickem frackem, I now approach the job from a different perspective by looking for productive ways to accomplish the task. Not only has this thinking reduced my stress level, it has made me a better employee.

Now, how does this relate to earthquakes. Well, you see it’s like this, within a few months after arriving in Los Angeles I experienced my first earthquake. I believe it was the Sierra Madre quake I experienced while preparing for work one morning. I will tell you it was the most interesting experience of my life. At first, it was pretty funny. The Landers/Big Bear quake a few years later was less funny. The Northridge earthquake in 1994 was terrifying and since then every little shake has caused me to cling to the ceiling.

Strangely enough, in the past few weeks I have been feeling a little edgy and, long story short, I realize it may be due in part to the recent earthquakes around the world. Logically, I know if there is a big bang there and a big bang way over there, eventually there will be a big bang here. Being realistic, I do live in what is known as the Ring of Fire.

Instead of allowing myself to sink into a pit of stress because I feel something but I really don’t want to deal with it, I have decided to learn everything I can about earthquakes — keeping me out of the realm of fear — and go with my instincts in spite of the shock I may experience when I find myself doing something odd like checking for my keys every night.

Okay, let’s get to the nitty gritty of fear. Monday night/Tuesday morning I felt something was about to happen because — again going back to instinct — I checked for my keys, moved a coffee pot back from the edge of the counter and I was obsessed with the USGS earthquake map. Thankfully, when the 4.4 earthquake hit in Pico Rivera, I felt the shake and almost wanted to return to sleep. This was a good sign because in the past I would have been glued to the ceiling.

I got up and walked through the house and found my big ‘ol dogs were asleep in REM land. I was glad I moved the coffee pot because it had moved slightly on the counter. It would not have been cute if that thing had fallen on my deaf dog who was sleeping beneath it.

SoCal's Big Squeeze

I grabbed my laptop to check on the magnitude and location of the earthquake and found it was in Los Angeles, on the Whittier fault. That has since changed to what is known as the Puente Hills fault — the fault that was all the rage a few years ago as being potentially dangerous and damaging to downtown Los Angeles and surrounding areas should it erupt. I could feel the fear come over me when I read it was actually the Puente Hills fault and my fears increased more and more each day upon seeing no aftershocks. We still have not had an aftershock since the initial quake.

Noticing my stress and fear levels had elevated, I realized I had to research the thing, look at it and dispense with my fears. If the big one hits, there is nothing I can do about it. Too, instead of avoiding reality, I decided to follow my instincts in spite of the shock it caused me.

First, I felt a need to buy lots-o-batteries. Second, I felt the need to check my prescriptions. Shocking, I now have a month’s supply of oral Cytoxan, just in case. If the “big one” doesn’t happen anytime soon — and I hope it does not — I will have my kitchen cabinets fitted with earthquake locks this weekend. I now have lots-o-water and dog food too. Admittedly, some of this — particularly the Cytoxan — was acquired prior to Tuesday’s quake. Now I have everything I need to get me through one month.

Though it was a little shocking to find myself doing these things, I will admit I feel good knowing I was proactive. I might not want to deal with the aftermath of a devastating earthquake but it is better to be proactive than reactionary. The stress of reacting to an earthquake could thrust me — no pun — into a downhill spiral.

Facing my fears has become my new motto. Instead of running away, I am learning to face them head on. I don’t know if we will experience a major earthquake, I cannot predict them, but something within felt I should be prepared. Instead of ignoring these warnings, I chose to listen and heed spirit’s urgings. It made me feel uncomfortable and a bit nervous but it is better to keep my vision and not stick my head in the sand.

Personally, if an earthquake should happen, I would rather be in a position of saying “I’m glad I listened to my gut” instead of saying “something told me I should have done that.” Oh the many times I’ve found myself behind that 8-ball.

Now, will we have a major earthquake? Heck if I know. I do know I’m still a little uncomfortable with Tuesday’s event because we have not had an aftershock. Other quakes, shallower than that one, have had lots of aftershocks. This has done nothing since. Too, since it is now reported to have happened on the Puente Hills fault, it does concern me.

It is not comforting to know I live in the Ring of Fire but it is still better than shoveling a heap load of snow from your roof in the cold of winter, shoveling heaps of snow from your sidewalk, or trying to get to work in biting cold.  California is in the big squeeze which means eventually we will have a major earthquake.  Researching this has helped me deal with the inevitable.  Sticking my head in the sand would have been costly to my health.

After researching and experimenting with every software application available for converting anything to anywhere, I focused my attentions on the hardest physical job I would undertake, cutting grass. A part of me actually believed this was not going to be a hard job. Another part of me — the more realistic side — knew this would probably be the hardest job for me because of the chemo.

I have always enjoyed cutting my own grass. It is something I have done since I lived in Chicago. For me, cutting grass is zen and since purchasing an eco-friendly lawn mower — a Neuton — cutting grass has become a peaceful, no drama experience. Unfortunately, I’ve been ill and was unable to cut a lot of grass last year. In fact, and bless her heart, my 70-plus-year-old mother was actually cutting my grass for a time. Because last year was a low watering year, I didn’t really need a lot of grass cutting. This year, because of the rain, my grass was standing pretty tall and looked horrible. I was determined to cut my grass if it took me all day and it practically did.

I have a pretty large yard, both front and back, and on a good day when I’m in peak condition it will typically take me about an hour or two to cut both front and back. Yesterday, it took almost two hours just to cut the front grass. Though I am still strong physically, my endurance was shot thanks, presumably, to chemotherapy. Now my body is constantly besieged with fatigue and as a result, the simplest tasks tend to wear me out. Yesterday was no exception as I could only cut small patches of grass before feeling the need to sit and rest a while before resuming. I would cut, sit, rest, get up and cut again, sit, rest — this was repeated several times until the job was done and needless to say, I was not satisfied with just cutting grass, I wanted to trim the yard and cut down my dying rose bushes. I did it all and I will also add, soreness set in almost immediately.

In spite of feeling full-body soreness I was determined to continue on with all of my tasks for the day. I filled a prescription and visited the local farmer’s market. I did it all, in spite of feeling, walking and talking like a wreck of a person.

It was not easy cutting grass. It was probably the hardest thing I’ve done in my lifetime. It never took more than an hour to cut my front grass and I’ve never had to take rest breaks, ever. It was hard, but I got the job done and actually felt some sense of accomplishment. My yard is beautiful — well, at least the front is, didn’t do the back but I will and I’ll probably do it in phases.

A lot of folks have asked me why I haven’t hired a housekeeper or gardener since I’ve been ill and my answer has always been in Chicago, doing such things got you labeled lazy. To some extent I still believe that and this is why it is important that I continue to cut my own grass and clean my own house. The only person I need to impress is me. In the Midwest, everything is about owning yourself and being self sufficient. You don’t rely on others to do what you can do for yourself. That old fashioned Midwestern work ethic is still important to me and that is why it is equally important that I continue to do for me what needs to be done. Being able to cut the grass yesterday, in spite of having to start and stop several times, was very important to me. It meant a lot and for that, I am very grateful.

Life is good!!

On my first attempt, I used melted butter and tried to get away with using a non-dairy creamer. I ended up with dumplings that cooked too fast, were crumbly and not exactly what I wanted.

On my second attempt I used soft butter and milk. The little dumplings still cooked too fast for my taste and crumbly.  Instead of using cardamon seeds I used powdered cardamon and still the syrup didn’t provide the taste I was looking for.

On my third attempt I looked for recipes that were different than those I had already tried. The final recipe, found at showmethecurry.com was right on. Their recipe called for Ghee (also known as clarified butter) and rose water (or rose essence) for the syrup.

I always have ghee at home and I can easily make it myself. Fortunately, there is a wonderful grocery store close by where I can purchase all sorts of exotic ingredients and I was overjoyed to see they also sell ghee. You can also purchase ghee at Whole Foods.

As for the rose water, I got lucky. I really did not want to travel to India Sweets and Spices in Duate or on Los Feliz (the larger store). Instead, I did a Hail Mary and traveled over to Whole Foods where I was pleasantly surprised to find they actually sell rose water. Fabulous.

Meanwhile, back at the ranch, I had everything set out for attempt No. 3. The recipe is not difficult and does not require a lot of ingredients. The following is what you will need:

For the dumplings:
Instant Dry Milk (Milk Powder) – 1/2 cup
All Purpose Flour – 2 tbsp
Yogurt – 2 tbsp (I used condensed milk)
Clarified Butter (Ghee) – 1 tbsp
Baking Soda – 1/4 tsp

For the syrup:
Water – 2 cups
Sugar – 2 cups
Rose Essence – few drops, optional (I used rose water)
Cardamom Powder – 1/2 tsp or to taste
Saffron – few strands, optional

Oil – for deep frying

My Gulab Jamuns

For mixing and all of the how tos of preparing the Gulab Jamun, I’ll ask you to head over to showmethecurry.com to both view the video and read the description on how to prepare.

I will add a few things to what they offer there as something to watch for if you plan on preparing a batch of delicious Gulab Jamun. Ghee is important as it does not burn as fast as butter.  The milk particles in Ghee are removed, i.e., clarified butter. I love it because I can easily cook with ghee without having to worry about food cooking too fast or burning — like my first two batches. There are numerous recipes for Gulab Jamun that lists butter as one of the ingredients. I personally would recommend purchasing clarified butter or ghee instead and just keep it in the fridge. If you ever need to saute something and you would typically use butter, try ghee instead. You will be glad you did.

Using ghee made frying the dumplings a whole lot better. They didn’t burn as quickly and I could watch them turn that beautiful golden brown (I call them orange balls) without having to worry about them getting crusty. The butter was clearly not a good idea.

Second, you may have to add milk to your dough mix if you find your balls are too crumbly. The recipe above lists yogurt as the bonding agent. I did not have plain yogurt at home, instead I used what I had and that was condensed milk. You don’t need much but, while kneading the dough, if you find the dough too crumbly or if your balls are consistently coming up with cracks, add more milk. I found I could get the perfect ball when the dough had a gooey, sticky consistency. A perfect ball is when you roll it around in your hands and you don’t see a crack or dent anywhere. That’s a perfect ball.

I’ll add one more thing and you will see this in the video, spread a little ghee around in your hands prior to making the balls. This will keep the dough from sticking to your hands. That was one very good piece of advice.

It is also important to note that while rolling the ball in your hands, squish it a few times and roll out. This helps to create a nice tight ball and you will need a nice tight ball when you begin the frying process.

Finally, the missing ingredient for the syrup was rose water. What a big difference. The rose water in combination with the ground cardamon was just what I needed to get the authentic taste I was looking for.

Health Benefits:

I’ll start with the Rose Water since it dates back to ancient Egypt and is a popular oil for the senses and romance. Rose Water can be applied directly onto the skin to soothe it and, like Lemon Oil, if ingested orally can ease the digestion process. Just opening a bottle of rose water is enough aromatherapy to cause you to feel lifted from the kitchen and planted somewhere in a field of roses.

Cardamon, my favorite, is known as the “queen of spices” and numerous health benefits, such as improving digestion and stimulating metabolism. The seeds contain a volatile oil. The principal constituents of the volatile oil are cineol, terpineol, terpinene, limonene, sabinene, and terpineol in the form of formic and acetic acids.

It too is the spice of love as Ancient Greek, Roman, Egyptian and Arab cultures considered it to have aphrodisiac qualities and was used in love potions. The Arabian Nights makes frequent reference to it.

Saffron, another aromatherapy favorite, has been credited with enhancing memory. I wouldn’t know because I am taking and dealing with so much I’m in a fog every day. But, be that as it may, saffron contains carotenoids and medical studies have proven that it helps in enhancing oxygen diffusivity in the plasma and other liquids while improving pulmonary oxygenation. The carotenoids in saffron are known to inhibit skin tumors and improve arthritis in various independent medical studies. The numerous active constituents in saffron are also known to bring about a positive effect on people with neurodegenerative disorders and memory impairment.

Ghee (Clarified Butter) in your diet will carry fat-soluble foods quickly and easily inside cells. Such foods will reach where they are supposed to reach, to work the way they are supposed to work. Ghee has beta-carotene and vitamin E, both known anti-oxidants that counter the effects of free radicals. Ghee supposedly even repairs the mucus lining of the stomach and evens out the acid balance. I highly recommend it and of course, aromatherapy, aromatherapy, aromatherapy.

Conclusion

I was very delighted with my final product. It took three tries and different recipes but I finally got it. Now, instead of driving long distances to buy a few for $6.00 or $7.00, I can make a 10 or 20 of them at home and keep them in the fridge. It was a beautiful thing.

So, if you’re ready, willing and able, head on over to showmethecurry.com, prepare your hands and fingers and get started. It’s worth it.

My Favorite Links

Show Me The Curry — ShowMeTheCurry.com is an Indian recipe website. They produce and distribute free Indian cooking videos through which they attempt to show the viewers step-by-step, easy to follow instructions on how to make delicious Indian food.

Titli’s Busy Kitchen — A wealth of recipes here from all over the world.

Manjula’s Kitchen — your home for Indian Vegetarian Recipes and Cooking Videos.

I was so looking forward to the evening too. My plan was to prepare one of my favorite desserts, Gulab Jamun, an Indian dessert I have always wanted to make myself but felt the preparation too hard and required too much time. Since deciding to prepare more food at home instead of buying out, I looked forward to making this tasty little dessert I love so much.

Unfortunately, as it is with most things in my life since my kidneys went south due to lupus, I had to bow out of enjoying “Girls Night In”. Equally unfortunate was having to bow out of some personal tasks I had planned for myself this weekend as well.

It might have been the rain that caused me so much pain. The bones ached, the joints ached, my muscles felt weak and, overall, I just felt like sleeping the entire day. Actually, I’ll be honest, I did sleep most of the day.

It is the not knowing that bugs me. I wish my body would give me a calendar of events and with said calendar I could plan. Alas, no such calendar exists. Perhaps had I known the rain might cause me pain I might have planned better but, then again, the weather man is not always right and rain is not always the cause of my pain.

Take for instance my planned trip to San Francisco last year. When I planned the trip all was right and well with my kidneys. However, on the day of my planned trip the kids were not happy, my legs were swollen and the trip was not as productive as I had hoped. I went anyway only because I pushed myself to go. I have planned similar mini-getaways in the past only to have the plane take off without me, money wasted.

Because I never know, I try not to plan anything that may require my presence. In fact, when asked to attend anything or when invited to events my answer is typically “don’t look for me until you see me.” This ensures if I am able, I will be there. If I am not able, I will not be there.

I’ve had friends — well meaning friends I might add — invite me to events with the words “oh come and I’ll make sure there’s a place for you to sit and enjoy yourself.” The sentiment is beautiful, however, they don’t understand there is something called preparation. I have tried to explain the process of preparation to no avail — this is why I love the spoon theory.

Preparation starts with a question: Do I have enough gas or steam to get me in to the shower, dressing myself, hair and makeup, shoes, and then out of the house? Next, do I have the necessary umph to climb into either of my cars and play with the steering wheel, gas and brake peddles? Yes, that’s right, driving — something I once took for granted — can be a tedious act for sure and I no longer take it for granted.

Though the comfy chair is something nice to look forward to once I arrive, getting there is always the question and often the problem. Yesterday was one of those days when getting there was the problem. I could do nothing more than sleep, do a little something, stop, sleep more, do a little of something else and sit or sleep more. It was a horrible day.

That said, I have always believed when handed a lemon, make lemonade. I knew the planned dinner party was out of the question for me yesterday because of the pain. Instead, I focused what energy I had for redoing my kitchen as best I could.

To qualify my pain yesterday, on a scale from 1 to 10, 10 being the highest, my pain passed 10 and soared to the heights of something near 110. Yes, that bad. Every part of my body ached. I have hydrocodone (Vicodin) but I don’t believe in taking the stuff. Instead, being a hardass, I suffered through my pain enduring every bit of it. My plans for the kitchen was to remove all of the useless crap I had in there and replace it with crap I can really use. I won’t bore you with what the crap was exactly but I will say this, a few years ago when I purchased the crap it was cute. Today, I’m older with health issues and the crap quickly became cute but not functional.

Yesterday, my plan was to make a run to Bed, Bath & Beyond for a quick shopping spree and return with more functional crap and cooking utensils. Since my diagnosis with lupus nephritis I have found my kitchen was not conducive for actual cooking. Again, cute but not functional. Eating out is not conducive to good health either which meant, in spite of my pain, this had to be done.

I also wanted to clear out cabinets, move items, sort my cabinets for easy access and create a huge space for preparing food. In spite of the pain and agony I was only able to make a dent in the project. On a good day this job would have taken me a good three hours to do. Unfortunately, it took me an entire day to make a dent.

I did make it to Bed, Bath & Beyond, I was able to clear space for cooking, I was able to sort some, not all, of my cabinets and I was able to replace some of the useless crap in my kitchen. In between completing some of these tasks I took naps, lots of naps. At midnight, I threw in the towel and quit. As a reward for giving it a good go, I made a pizza.

I have always wanted to make a pizza at home with fresh veggies and I did it. I am grateful Trader Joe’s has pre-made pizza dough because my fingers were in no shape for kneading dough. Though I was too hurt and too tired to actually enjoy my homemade pizza, I will say it was delicious.

The joy of making a pizza with fresh tomatoes, veggies and cheese without the added salt often found in store bought pizzas or those ordered out was a joy in and of itself. Smelling the scent of dough cooking in the oven was equally joyous. Oh the joy of cooking with all natural ingredients. Store bought is nice but something has to be said about cooking it yourself in spite of the time required to do so. In the end, though I was too tired to actually feast on my pizza, it was the best pizza I have had in years.

Ahh, the best laid plans. Though I ended up bowing out of the dinner party last night, I did accomplish something for myself that was very personal. My kitchen is now somewhat functional. I could not complete the task as I had hoped but, for what it’s worth, it is at least at a place where I can cook good, wholesome food and that’s important.

I did not make my Gulab Jamun as planned either. To prepare these tasty treats that are good to eat I needed to have hands capable of both kneading dough and rolling the dough to make the balls. Perhaps I’ll try again today.

As an admitted hardass, I will push through pain and fatigue as best I can to get what I need done. A three-hour project took me from 6:00 a.m. to midnight to almost finish. It ain’t done yet. In the end, though it was not easy, I do have a sense of accomplishment in that I was not defeated. I did something. Maybe it was not all that I had hoped for but it was something and I can’t get mad at myself for that.

I did not make it to the dinner party last night but perhaps I’ll make it next month and we’ll have a good time. If not next month, then perhaps the month after. Thankfully, I have friends who understand.

So, my daily do is this: I have no plans. I really cannot make plans and with that, don’t look for me ’til you see me. In the meantime, I’m working in or around my house as best I can.

Chief Seattle: There is no death, only a change of worlds.

The other day I received some sad news about a young girl who lost her battle with lupus. Like me, she too had lupus nephritis. For the past few days I have been asking myself why it is that me, the old fart, is still around when so many younger than I are not.

My guess is the question is not an uncommon one for those of us who are the ones left behind. That question and more are asked and never answered. We wonder, we grope with meaningless words and there is the descending shock that says we will never see or talk with that person again. The phone will not ring, you will not hear their familiar jokes or witty expressions, a familiar silence falls upon you that says the journey you shared is over.

Always I am reminded of the famous speech by Chief Seattle in 1854 (you can read it here). The last words of his speech are: “Dead, did I say? There is no death, only a change of worlds.”

I don’t remember how I came across this speech or where I first heard the words, I only remember how struck I was by them. Having lost my father at a young age, I think I found the words comforting as it related to him. Afterward, I found the words comforting in knowing that beyond this life there is another and we must live each day as if it were our last.

As I lay in a hospital bed — for seven whole days — in 2005, I was the last person to suspect I was in serious trouble. I have since discovered a few friends of mine and my mother thought I would not make it through the weekend. I had some suspicion I might have been in trouble when one of my doctors came to visit me on a Sunday to tell me he was glad I did whatever it was I did to get myself into the hospital. His conversation fell short of saying “it probably saved your life.”

It was not until my release from the hospital, while in my yard being miraculously buzzed by hummingbirds, that I realized the precious gift of life. I stood there, crying copious tears, talking to the hummingbirds saying “I missed you too.” It was an emotional scene primarily because I felt the presence of God and felt He brought the birds to me not only for comfort, but to also let me know He is always here. I’ve not experienced a scene like the above with the hummingbirds since. Miracles happen every day. In order to experience them we must be open to them and believe they can and will happen.

I believe I took Chief Seattle’s words to heart when I first heard or saw them. I have no fear of death and thus, if it comes, it comes. I have noticed something about myself since my diagnosis though and that is I have become fearless.

My partner, who died in 2002 from breast cancer, was also a fearless woman. At first I thought her ways a bit too harsh and there were times I thought her too mean. As I got to know her I realized I was seeing the words of Audre Lorde played out though her and those words are: “Once you have faced that death which can come from cancer you can give full rein to your rage and your love and become fearless.” Cancer aside, I believe once you are diagnosed with any life threatening illness you feel compelled to “give full rein to your rage and your love and become fearless.”

I have noticed this fearlessness in friends of mine who are cancer survivors, those who have suffered and survived heart attacks, and those living with potentially life threatening illnesses. They are fearless women and men and more importantly, they are living each day to the fullest.

Why did I come to this on this day? It is not due solely to my hearing of the young girl who lost her life. It is due in large part to a conversation I had Saturday evening with some of my friends, all of whom face life altering or life threatening illnesses. We have all come to the belief that death is merely a change of worlds and as a result, death is not something we fear. Second, we have all given full rein to our rage and our love and this became the topic of conversation.

Though this may be hard for some to hear, the death of the young girl not only brought meaning to me but to others as well. Her death taught me to take nothing for granted. I may feel blessed and lucky to be here today but next year this time, maybe not.

With that, particularly after Saturday’s conversation, I have learned something very important. Though the cross I bear is something I would prefer not having, it has brought wealth to my life. My diagnosis with lupus has brought a different death to my life and a change of worlds. There was a time in my life when you could find me anywhere but at home. I was always out doing something. Now, I talk with my mother every day. We spend a lot of quality time together. I spend quality time with friends and less time (if any) with folks I call psychic vampires — negative folks who steal your energy.

I have also given full rein to my loves and my rage. I am no longer a push-over, I now push back. I have also found I have no patience for pettiness, folks who want to blah, blah on about nonsense, people who whine about someone owing them something when no one owes you a thing, and other superfluous nonsense that makes no sense to me whatsoever. The grim reaper and I may have a high tea date sooner than later, I don’t wish to spend any of my precious time listening to a lot of hot air. The urgency will be heard in my voice as I shut you and your nonsense down. I have no patience for it. This was not always the case with me. My intolerance began after my diagnosis and release from the hospital.

Instead, I chose to do only those things I wish to do. Those things that were once important to me are no longer important. I am no longer interested in fancy cars, fancy clothes, being seen, heard or smelled. It has no bearing on who I am and they don’t define me. Lupus has brought me to a death of selfish thinking. No longer to I look at the world and watch how people react to me. Instead, I am now looking at myself and paying close attention to how I relate to others. It is a change of worlds.

My conversation with friends this weekend was an enlightening one. One friend who has severe arthritis told us how her debilitating disease has helped her accept gifts from strangers. The once self sufficient woman who did not allow anyone to help her now enjoys random acts of kindness from strangers who offer to help her onto an escalator, hold doors for her, or help her with her groceries. She says she has helped a lot of angels get their wings. A change of worlds.

Another friend who suffered a massive heart attack some years ago told us how he was once so into his body and strength he failed to impress those closest to him, his wife and children. It has taken him a few years to repair the damage caused by his mental and psychological absence but he made it as important to him as bench pressing hundreds of pounds to “look good for my age.” He now wants to look good for his wife and children and spend quality time with them. A change of worlds.

A very beautiful friend of mine has alopecia. As a young girl, she defined herself by her — I’m going there folks — light skin and “good hair” until it began falling out. Before long, those long beautiful locks were gone, along with her eyebrows and eyelashes. She went from “fine to the brunt of jokes.” She fell into depression, alcoholism, drug abuse and finally self acceptance. She now teaches young girls that beauty truly is skin deep but real beauty comes from within. She turned her life around and took a look inward to become a very beautiful woman with a radiant spirit. I just love being around her. A change of worlds.

An illness — even one that is life threatening — does not mean the end of the world. If we look we might find the blessing. Are we to teach? Could we use our lives and our illnesses as an example for others? Is there a lesson we must learn or something we need to give up in order to move to a different or higher spiritual plane? Depression is fine but it is not productive. Instead, we need to turn it around. Instead of seeing the negative, look for the positive.

Sure, I would love to have the energy I once had to hike up a mountain trail and photograph the valley below but I cannot. Instead of wasting precious time kicking myself, pitying myself, or drinking myself into oblivion with memories of what I used to do, I have now begun exploring the world of macro photography. Yep, the one thing I once thought was oh so boring is now oh so exciting.

My young friend wanted the world. I called her “Ms. Why” because she always asked why. Why this, why that, why, why, why. For me, that’s always a good sign in young people. Always ask why and take nothing at face value. Loved that about her. She did not like the steroids, how it blew her face up and the laughter she received at school from peers. It was hard on her but, in time, she overcame. She learned to fight back and as Audre Lorde said, she gave full rein to her rage and her love and became fearless. I was proud of her.

Her death came as a shock to everyone including me. I thought she would make it. I have since heard one of her school mates told her brother she didn’t know anyone could die from lupus. Now they know. Actually, the kids are so curious they want to pinpoint exactly what it was that caused her death. Apparently, the kids are talking about raising funds for lupus research and even participating in a walk for lupus in her honor. A change of worlds.

Death is not always physical. It could be the death of your old life and the change of worlds is becoming a different person or seeing in a different way. Like the death card in the Tarot, it does not always mean a physical death. Death is inevitable, it will come. Until then you have to ask yourself what now? This is what I have had to ask myself. What now? What can I do? Is there something I need to see?

So, to all of my lupus sorors, those with debilitating illnesses, and survivors, on those bad days give very little time to “how sad I am.” Instead, think about what you can do. The writer, the author, may be screaming deep within. Let that voice be heard by being silent and listen. You may think you have no talent to draw but you may be very surprised to find you can. Music soothes you, perhaps there is a song you need to sing. As you experience the death of your old self, wait for the change of worlds and you may find yourself pleasantly surprised.

Give yourself over fully to your rage, to your love and become fearless. Soon you will see a change of worlds, embrace it. Don’t fear it. You can take that however you wish.

My Maternal Great-Great Grandfather's Brother

Friday and Saturday were pain days for me. I could blame the pain on the coolness of the days which eventually turned rainy by Saturday or perhaps it was due to something else. Whatever the case, I found myself able to do very little in the way of activity sans necessity.

To keep my stress level down from feelings of inadequacy, to feeling useless or worse, feeling as if I wasted two perfectly good days, I try always to keep a backup plan. My backup plan for “rainy days” or “days when I feel blah” was to research my family tree. Yes, this was the next thing on my to-do list and had me spellbound.

As a young person, I was never interested in tracking my family tree. I assumed all of my great-greats and great-great-greats all came out of slavery and that was the end of that. Over the years I heard some of these people were actually Indians and there was talk of a great-great-great grandmother having Jewish ancestry. Really? Going on word-of-mouth, I assumed these folks knew what they were talking about and never questioned them. It is quite amazing what you find when you look at actual census reports.

Unfortunately, I have found data transcribed from handwritten census reports are prone to human error. I had to correct a lot of names these past couple of days because the handwritten text looked like one thing – which was right – but was transcribed as something else. I know the names of uncles and aunts but the person transcribing the handwritten text saw their names as something else. Call it human error.

Once I got past the many mistakes made from transcribing handwritten text, I discovered errors made by the living of the dead. Did Native Americans involve themselves with the census? If so, did they consider themselves White? I will need more research to know whether or not this is true. What I did find in the line of my maternal and paternal grandparents were lots-o-mulattos – or mulattoes, pick your poison.

According to the National Archives, the 1870 census schedule was the first to list “Indian” under color. However, “Indians” were counted in the census going back to 1860.

The first federal decennial census that clearly identifies any Native Americans is the 1860 census.* The instructions to the 1860 census enumerators defined who was to be counted and who was not:

Indians not taxed are not to be enumerated. The families of Indians who have renounced tribal rule, and who under state or territory laws exercise the rights of citizens, are to be enumerated.**

*The instructions for the 1850 census, the first in which all members of the household are listed, did not provide for the enumeration of any Indians. There is at least one instance however, in which Indians were identified: Pueblo Indians are identified as “copper” in Taos County, New Mexico (Seventh Census of the United States, 1850, National Archives Microfilm Publication M432, roll 469).

**Eighth Census, United States—1860. Instructions to U.S. Marshals, p. 14.

Source: The National Archives: Native Americans in the Census, 1860–1890

The phrase “Indians not taxed” means those Indians “living on reservations under the care of Government agents, or roaming individually, or in bands, over unsettled tracts of country.” There were also “Half Breeds” (listed on the census as “HB”). These were mostly the product of white men and Indian women. When I was able to see an actual census document of a family member, the column for color clearly stated, “Black,” “White” or “Mulatto.” Nothing said Indian. The form of identification for my family members was “M” or “Mu” for Mulatto, no “I” or “HB”.

There are some cases in which the coding for persons of mixed heritage is “I” or “W” and, in rare cases, “Mu” (mulatto) or “B” (black).

Source: The National Archives: Native Americans in the Census, 1860–1890

The word “mulatto” gets interesting too as it does not necessarily mean the product of a white man and a black woman. The census also defined “mulatto” as the product of a union of a black and a mulatto. The child of any slave who had one white grandparent, whether by a white or black spouse, would be a mulatto. Very interesting and it took a lot of census digging to find that one.

For those born in slavery, it is common for them to have not known their fathers. When you read the narratives or oral histories of Frederick Douglas, Moses Roper and others, you will find some of these children (or mothers and their children) were either sold or otherwise removed from the plantation after the birth of a mixed-race child.

Considering the above, I ran into another piece of interesting information. While researching alternative sources for my Great-Great-Grandmother, I found an interesting link to “The Bowden Family Story”. Mary Bowden was an indentured servant of Austin Washington, brother of George Washington. The article states “Interracial marriage was illegal and mulatto children were to serve as indentured servants until the age of 31, when they were freed by Virginia law.”

The above is interesting because I can track my maternal Great-Great-Grandmother and Great-Great-Grandfather back easier than others in my family tree. Were they freedmen? Former indentured servants? I don’t know. As a side note, I was not able to track my Great-Great-Grandmother to the above-mentioned Bowden women.

I was able to track my paternal grandmother back to slavery through her father, listed as Mulatto in the 1870 census. At the time, my Great-Great-Grandfather was 10-years old living with a white family, the Rawlings. As for my paternal grandfather, I can only track him back to the age of 18 during the time of the 1880 census where he – the only one I might add – is listed as “Black.” At that time, he was living with a white farmer, John Deyer. Unfortunately, his wife Mattie, my Great-Great-Grandmother, threw me right back through the open door of mulatto. I could go further back with her than I could the only black identified member of my family for that time period.

The census reports got really interesting as time went on. Those in my family once identified as Mulatto were later identified as Black. Some went from Mulatto to White, right down to their death certificates. As I told a friend of mine this weekend, my family gets a little effed up as time goes by, which explains some of the dysfunctional behavior I personally witnessed as a child growing up. To this day I hate to hear people ask the question “was he (or she) light or dark?” I don’t answer such questions because I grew up hearing enough of that crap to last many lifetimes.

The reason why I wanted to research my family tree, particularly my mother’s side of the family, is because I had heard the many rumors of Indians and Jews. What I found were Mulattos. If there is any Indian or Jews they are not mentioned in the census report but that does not mean the handed down stories are not true. They may be but there is no historical data to prove it.

Even more interesting, my brother took a mitochondrial DNA test last year which showed his maternal genetic ancestry – my mother’s side of the family – shared ancestry with the Mende people in Sierra Leone today. Unfortunately, this test did not supply the standard identifiers (haplogroup) needed to plug into a database that would, at the very least, pinpoint the continent of Africa, if that is the case. Instead, this test only offers something called HVSI indicators (I guess) and goes through a lot of wordy text about hypothetical base pairs and variables that lead them to the Mende people of Africa.

Although very nice, this test is worthless as far as I’m concerned. It could be right on but, for the sake of my research, I need the data they admittedly withhold to instead pinpoint a region and a people. Again, it’s very nice with lots of snazzy graphics but they should have provided the haplogroup as well and perhaps I would have found the information more believable.

This project is ongoing and I will hold for another lazy, hazy, day of pain. Sans the strange test that links back to the Mende people of Sierra Leone, I have nothing else that links back to Africa. I do know everyone, so far, was either a slave or indentured servant. Since they were considered property, there is no direct information that links back to Africa or anywhere else.

The sad news about being the descendant of slaves is having no history. Like the Portuguese proverb I learned of many years ago, to destroy a people you take away their books, their language, their culture and their history and replace these with new books, a new language, a new culture and new history.

The search continues.

And I can’t wait to get on the road again.
On the road again

Goin’ places that I’ve never been.
Seein’ things that I may never see again

I like all sorts of music and I’d be hard pressed to say what I like more. At times I believe Country & Western serves as the background music to my life and Willie Nelson’s “On The Road Again” has come up for me many times in my life and today is no exception.

I had to take a few days off last week to gather myself for what I knew would be a few days of hard living. Last Wednesday I asked my doctor about decreasing my prednisone and he agreed to drop it from 20mgs to 10mgs. For those who are unfamiliar with prednisone, the drop is equivalent to someone going 100 miles per hour down a highway and midstream they find themselves only able to go 50 miles per hour. To really drive the point home, imagine yourself driving fast and furious, passing everyone you encounter on the road and then, all of a sudden, you can’t even keep up with the speed limit. The cars you once passed are now passing you and the drivers are flipping you the bird, blowing their horns, some are laughing, etc.

Unfortunately, using the above scenario, human nature will cause you to do foolish things like floor the gas peddle or push the engine and neither will do you any good. In fact, performing such foolish acts might serve up a healthy dose of bad.

When I’ve had my prednisone reduced in the past, I found myself a prime candidate for SOS (Stuck On Stupid). Fear has a way of raising its ugly head and fear will serve you up a healthy dose of bad in all sorts of ways. Fear is what makes you gun the engine, floor the gas peddle, blow sweat, get mad, etc. Basically, I pushed myself, in spite of myself, to do what I was able to do with half the stuff I came in with. Did that sentence make your head swim?

Now you won’t notice the drop the first day but you will the next. The first noticeable sign is the decrease in speed. With the same amount of pressured applied to my personal gas peddle I’m only doing half the speed.

The second noticeable sign is pain. For the first few days I start feeling as if the prednisone was covering my joints. Now that the drug has been reduced I can feel the pain roaming through my body and settling in my joints. My thumb is usually the first indicator of the drop as it begins to feel a little swollen, hard to move and painful. Afterward, the pain moves to one or both elbows, hips, and knees. Sometimes I may feel pain and stiffness around my shoulders and neck.

Finally – and the reason why I needed some days off – I begin doing what I’ve done all of my life, play mental gymnastics with myself. I needed to pay attention and pull the plug when the mental games began. Again, to use an analogy, this means at the first sign or indication of car problems I must pull the car into the slow lane or off the highway altogether. There are no points and no rewards for being SOS by ignoring warning signs.

Typically, I will experience flares as a result of stress. In the past, when prednisone was cut back, I would continue working, pretending the side effects of the cutback won’t bother me because mentally I want to be a hard-ass by proving – to myself mostly – that it will not affect me. Proof by experience has taught me being SOS will invariably cause me to hit a wall, have a flare, inflammation sets in and back on the ugly stuff I go. Instead, I chose to take time off, wait and watch for the triggers that cause my brain to floor the gas and gun the engine. I don’t want the car to fail this time and end up in the shop for another expensive repair.

Prednisone is a wonderful drug with some powerful side-effects. It can hype you up big time and the hyping causes me to lose sleep. If I’m lucky, I might get four hours of sleep a night. Typically I’m not that lucky as it is more common for me to sleep two hours on, 30-minutes up, and two hours on again and then I’m wide awake. There’s nothing recuperative about sleeping like that. When I drop prednisone, particularly at 10mgs and below, I tend to sleep between 8 and 10 hours. Sleeping is easy at 10mgs or less.

As an aside, I read Michael Jackson’s autopsy report and saw he was still on prednisone. Apparently, his dermatologist prescribed prednisone – 10mg tablets – to start at 60mgs which was to be reduced the next day by 20mgs to 40mgs. The report does not say how far down the reduction was to go before – if at all – stopping. From experience, 60mgs will have you awake much of the night with night sweats and you will be hyper as all get out. Not only will it affect your sleep, you will also want to eat a whole cow in one sitting. I have been as high as 80mgs per day.

Since Michael Jackson was preparing for a big 50-show concert in London and being a perfectionist Virgo, I can see him doing drugs (downers) to combat the hyper feelings one gets from prednisone and the associated inability to sleep, thus propofol, a dangerous drug indeed but in his mind he must have rationalized his actions as acceptable. You do what you gotta do in order to do what you gotta do thinking. To use my car analogy, this is the equivalent of driving your speedy car to the edge of a cliff and applying the brakes just before going off the cliff. You might win the gamble many times but you only have one time to lose.

Unfortunately, Michael’s doctor took a gamble too, probably due to fear because he knew that he knew, but instead of being proactive he was reactionary and that’s a bad place to be. I’ll talk more on that later.

Moving on, now that I have discovered the mental triggers that cause me to do stupid stuff like gun my engines, I was more relaxed during this reduction and it helped me. Instead of going in to work one day doing 100 miles per hour and appearing the next day doing only 50 miles per hour, I was able to cut down on the stresses this would have caused me. Instead of hitting the fear button by gunning my engines and pushing myself, I was able to smoothly change lanes, get myself – mentally – into the slow lane and finally, exit the highway to take surface streets. Now, with no pressures in the way to push myself, I can settle into “I’ll get there when I get there.” No pressures to push myself, no gunning my engines which will invariably cause fears, giving rise to stress, which will invariably cause pain and inflammation, my internal organs will become shock absorbers for stress and bang, a flair, my kids will go into unhappy land, and back up on the prednisone I will go.

The hardest lesson for me to learn is I am no longer a spring chicken. At my age, I really do need to slow it down. When I was younger I easily bounced back from many things. Today, however, not so easy because there is age, menopause and my body has to deal with some of the stuff I did in my youth. Yep it does catch up with you at some point.

With that, I’m on the road again. I realize I am substantially slower than I was prior to the drop but I avoided the “OMG what’s wrong with you” criticisms that are often the mental triggers I use to push myself to get back up to speed. That hard ass drill sergeant was put to bed this weekend and I, thankfully, avoided a good deal of stress.

Now, let’s see, I can’t wait to see my cheeks again and that predi-tummy, well, time to work on that one too.

Since 2005 I have had to learn to manage stress, learn to take time for relaxing and learn discipline when it comes to eating and staying on diet. It has been hard but, with the information I have gathered over the years I will put it all together now and learn from my scribbles what I can and cannot do and what I will need to do going forward.

As for this site, I have recently updated the links section with all of the links I have gathered over the years re blogs and communities. Do check out the Lupus Communities & Blogs section for an update on blogs I follow.

I am also battling — as I am wont to do — with whether to turn this site into a lupus community site or keep it as my personal blog. I dunno. With the emails I’ve received lately, I almost want to create a one-stop for communications regarding lupus. The jury is still out and I dunno. We’ll see.

I hope to do more soon but I must also do some things around the house like seed the yard, cover over Boxer dug holes as they have been exploring the world of gophers, and a there are things I need to attend to in and around the house.

My health update is good. The protein leak has improved significantly but I’m having problems with potassium. I had to increase my intake to 40 mg for a while until the labs look good. On the bright side, my dosage of prednisone has been decreased. Hooray. Hopefully, I’ll soon see my cheeks again.

I’ll return soon, until then, talk amongst yourselves.