SERIOUSLY, Basic Triggers

There are basic triggers or activators that can effect how you feel daily and even set off a flare if you suffer from lupus. I am going by the straight assumption here that you have SLE lupus or know some one else who does. If you are newly diagnosed with this auto immune disorder, then you need to google all you can about your condition. Start with Wikipedia and read it as much as you can (it is very detailed), scroll down to the bottom. It will list 'well known or famous people' who also suffer from lupus. Note there that the men who are listed have died due to their lupus. It states it very clearly. Most information will say that lupus hits males harder. AND lupus twenty years ago was once more life threatening, but due to life changes and managements it has moved into a better prognosis for most. So if you can mange it what would you do?

Pay attention to these triggers. The longer you live with lupus the more you will know how they effect you and how much you can get away with. GET AWAY WITH? Yep, we are all human and it is hard to change and if you have just learned you have lupus you are feeling cheated of your lifestyle, discouraged, scared and even angry. Look at these triggers and eliminate them as much as possible. You will feel better and you may even come up with one or two of your own. The key here is 'feeling' your body. You really have to be honest with yourself and very determined to make changes. Your life style as you lived it before lupus ~~~ is now gone.

BASIC TRIGGERS

*foods ~~ celery, sprouts, night shades such as potatoes and tomatoes, dairy, squash family which includes pumpkins, melons, even echinacea is very bad for auto immune disorders and you will see it in health drinks--not healthy for you my friend!., google around. It is a little different for some or foods lupus trigger has an individualized flux to it. You know all those people you see in the shopping isles standing around reading labels? That is me! And now it needs to be YOU!

* hair coloring and dyes ~~ this will start a flare every time for me. I noticed a particular feeling, a sickening unusual one, whenever I colored my hair and I would start running a low grade fever. Then I started to just highlight my hair keeping the dye off of my scalp. Now I am going gray and I am totally happy about it. I think that all the Chinese ladies walking around in Chinatown with the pure white hair then the bright red hair one inch down did it for me. Natural gray is cool!

* sunlight ~~ for some this is truer than others. I used to be unable to tolerate any sunlight, even the reflection off the cement and the amount we get in cars driving. I actually had a low grade fever for 2 years. I thought my brain was being baked. Sunlight was a factor in that for me. When I moved to Hawai'i my first lupus doc asked me why I moved there to so much sun? I looked at him and said ".... Kansas has sun too". These days I tolerate about 2 hours of sunlight a day. Factor in the reflective light too, which means I still watch it closely. To give the doc a break, the tropical sun is more intense. BUT I found better products there to live with. Like the UV ocean shirts for diving, surfing, snorkeling and Leather Kangaroo hats from Australia that are totally a sun block. Australia has a big ozone hole so they have great sun products! And I found a sun block that works for me. Most just make me burn. Bigger selection in da islands.

* all preservatives ~~ ZERO preservatives is best. This also includes all artificial sweeteners and anything that YOU are allergic too. Read the labels. Then you will be amazed and angry for all the crap this country dumps into our products. Eating out? No MSG ever! Do not get discouraged either. There is way more good stuff out there now than there was 10 years ago. Now go find it!

* stress or trauma ~~ physical and/or emotional. You will be amazed how even simple noise such as music being played while you are shopping can wear you out. That is sound bombarding your body. This is the extreme example, but learn to stay away from it. Like the three times when I was rear ended in car accidents and one that was a t-bone. Those people need to not hit me!

* viruses ~~ I run and really do mean I turn around and hustle away from coughing people and all small children! A virus will set off your body to attack itself. First, you will get over what ever you caught. Second, your body will give you a flare in response to the virus. Now I am 58 years old so my kids are now 30 and 26 years old. I currently have no grandchildren, hmmmmmmm, and I live isolated in the country not in a complex around other families. Perfect! But, while in Hawai'i in April I was meet at the airport by my friend and his daughter and her two children. They had me sit in the back between the two boys who promptly mauled me lovingly with their hands. As we drove away from the curb they announced that the kids had been vomiting during the night. uh, ohhhh. Yep, four days later I awoke at 2am with the stomach flu; the day I had to fly out of Honolulu. Three plane rides later I am home spending one week recovering from the flu and now four weeks recovering from the worst flare I have had in years. But this was my fault. I didn't call ahead and check knowing that they had two small kids.

You can't expect anyone to monitor your world. You have to do it!

* anti-biotics ~~ this will cause a flare too. Don't take them unless you have to. If you are sick and then really need them and the doc says so, then don't worry about it.

What else? I am always up dating what I put in here. This is actually hard to sit down and think about how I have been living for the last ten years. I don't want to sound scary or negative, but I will say very honestly what has worked for me, what hasn't worked for me or what ever I have learned the hard way. My Mom says that no one likes the way I am too frank in my opinion and responses to people. Well, ...............if you have diarrhea and are throwing up then no one wants to visit you.....

PIG tails tales

While in Hawai'i on the the big isle in April I spent a lot of time chasing pigs. Lucky for me I am scary to them 'cause some of those big boars could like clean my clock! My trusty pig chasers Bella and little Leo were always so far ahead of me I just don't even know why I put on my slippas. Mostly all went well, the pigs were run off down the road to root and terrorize the land of others along Kaiwiki road. Now that I am back 'home' in Kansas ( I still have a hard time saying this is my home after living on O'ahu for 5 years, it is like choking on a switch blade.. in fact every time I met someone new in Hilo, I'd slip into a monolog of explanations and fear in my eyes and .."I am not really from there but I stay there... but I was born there..." The new people would kinda look at me and wrinkle their eyebrows and I could see inside their minds thinking I was maybe on some bad acid I found in my drawer left from 69....) ok, so denial gets ugly sometimes.

Back to the pigs.

I never got a picture of them grazing lazily in the Mac nut orchard and I sent out a couple of emails and got some pics from no less, the tea folks Jan and Gary who own the very same orchard. Now I can do a painting of the pesky pigs trashing the place. This prompted a .."do you remember that story you sent about the pigs you had ......." I emailed a lot of stories of my Hawaii life adventures. So here is the story I found saved in a dark drawer on a disc marked text.

For background info: during this time I was living with my boyfriend ( big mistake, but my rent was going up $400. buckos- welcome to Hawaii!) in Kahalu'u, the last house in the jungle at the end of the road after I had been laid off for the 1st time ever. I had taken a part time job at the Kualoa ranch 7 miles down the road driving the 6 wheeled jeeps trying not to go over the edge and kill all of us. Yes, they were paying me money for that.

Monday 12/20/2006

Aloha and guess what...The season for good food is upon us and last year the pig that was destroying the yard was plucked by someone and just 3 days before turkey day.... hmmmmm.

well, our 'this years pair of pigs' were growing fast and rather leisurely strolling in and out all day. Here in the mornings running gleefully up and down the drive way and then back at noon to chow on the newly fallen prized 'butter' avocados. They slept in the ginger wet from the rain run off, waiting for me to feed the chickens so they could graze with them on grain under the biggest mango tree. I knew they would be chasing the chickens soon, practicing to later eat them as these wild pigs do as they grow up and become more aggressive. And then soon they would eat my pond lilly because it is a root and pigs are rooters.

I took pictures of them under the clothes line with my new camera while they grazed in the warm afternoon sun on wasabe peas I had thrown out for the chickens ( cleaning out the fridge before Garrett started barking at me). I got close enough to touch them as I photographed away and then they would startle, then come back to feed because they were little 'piggies'.

Now they were distinctly different colors. The female was brown and her tail would wag constantly. The more aggressive male bother was darker and his tail was straight. He was cautious this last week and often I thought one pig was gone now, but he just would show up later. They were aging and he would soon leave her to go off into the valley behind us. She had to tolerate his nudging her away from the food, but she just wagged away and got whatever she could. Reminded me of my brothers and how I would squeeze between them at the table to get some food onto my plate.....

One day at the Kualoa ranch I asked about some one wanting them and Robyn said he could catch them. I asked Garrett since it was his house. He complained relentlessly about them. He said "yeah", then he got quiet. He thought they would 'catch' them by trapping. ( actually they are too big now) I said they would bow. He said he didn't want to know.

One afternoon Robyn came and he brought a friend, nice guy, a fireman from Mililani. They walked back into the jungle then came back and checked out the other side. No pigs today.

Saturday came and the pigs were here all morning. Oddly Garrett, the slowest man ever, was up and leaving. I called Robyn. Garrett on the way to his Bronco then threw avocado pits at the pigs grazing under the mango tree. Damn it! I was luring them to remain here until Robyn came. I yelled at him. After all he had just complained that the pigs had eaten more of our now sparse grass. He said " they don't have to die today" and drove off to do errands before the UH game. I said nothing. Garrett had just said he wants them gone and now said he doesn't want them gone. Robyn was on his way.

I fed the chickens for the 3rd time. The chickens clucking- feeding sound kept the pigs here. Then I walked up to the front of the gravel drive way and got a fallen avocado since the pigs had already eaten all the ones in the back. Robyn pulled in and took out his bow. I pointed and he saw them now. Easy pickn's. Just sit under the awning and shoot.

We sat there. Talking, the girl wag tail pig moved closer. Robyn threw out big corn chunks. Way better than chicken 2 way scratch! She looked at us and ate. He stood up. She bolted, then came right back.He moved his arm with the bow to get her use to the movement. She just didn't know him. I talked. She knew my voice, then he got into position. He asked "you want to watch?"

I said "yeah".

I set it up. I wanted to see. He explained how he would take her just behind the shoulder not to disturb 'the meat' and it would be quiet. She faced us eating away. Then she turned. Good shot. Robyn turned to me, he was as close to her as ten feet and he smiles at me feeling kinda...."she is so little, yeah?"

She bolts. He relaxed saying she'll be back. And she is. She faced us again. he moved over, she jumped, then returned. Suddenly as I watched her alive and trusting, knowing she would be shot any second he let the arrow fly.

She whispered in surprise and spun away from us and disappeared running behind the tree.

I turned around without moving my feet. Robyn spoke quietly walking behind me like he was unsure of my reaction. He didn't know me. As a child I'd hunted with my Dad and brothers. I was wanting the mechanics of just what happened. Robyn quietly spoke that he shot her behind the shoulder. The arrow goes cleanly through them. He reached out and tapped my leg lightly "It feels like that". They don't know what it is. The pig runs and then stops. She was bleeding out. Then she would die.

I was wrapped in the experience. We sat there and then up comes the male. "See, he doesn't even know" Robyn said. The sister was off dying yards away and the male comes up to eat. After he eats we never get a shot and he bolts. Robyn follows him into the jungle. I am alone.

I mean alone.

The chickens are freak'n gone.

It is quiet and sunny. I wait. Then I get up and check Tuffie's oil and water. I wait. I go inside and get on the computer to job search. I look up and Robyn is walking by the front door to his truck to put away his bow. We go to where he has pulled the female pig to the clearing where she ate. She looks warm and soft. He told me the male he shot but couldn't find him. He found only one of his arrows. Her blood was brilliant on the lime green ginger leaves.

So hopefully the male went down into the valley to die, not close to us to smell the death.

We bagged the female and loaded her into the truck. We sat and talked story. He will bring by some meat this week.

Garrett came home and we went to the game. He hasn't asked. I have said nothing.

The next morning he asked if I had "...fed the chickens and the pigs"? I just looked at him and felt my eyebrows arch. Huh?

He knows.

I will never tell him anything. He said he didn't want to know and so I took care of it. The male never came back. So I guess he is gone. The female was used and so not wasted. My Dad always said if you are going to hunt you must use what you kill. So that is what I believe.

I think it is so quiet without pigs eating peas under the clothesline here. The chickens were gone a day, only half returned. The pig pictures in my camera will be different now when I go back and look at them.

The thing about pain....

Lupus is an auto-immune chronic illness that pretty much once you have it then you got it. I am told that once your immune system flips then it can't flip back. Actually I am not buying into that thinking, but let me mention the 'pain' word here. With SLE lupus there is a lot of pain. And it does things to your head such as triggering depression. You know the 1-10 scale the docs use to ask you how much pain you have today? Well lupus is in the 6 to 10 range on a normal day. If you are in your first flare attack you are thinking like the 28 range.... but nurses don't want to hear that. Then you are whining. It is amazing how the mind works when it is managing a great deal of pain. And different people types react uniquely differently to it. How do they treat this pain? Basically with a meds cocktail. I take a drug called Plaquenil that is common for treating auto immune disorders. Then I take the anti-inflamitory Mobic to keep my joints happy and then I take Tylenol. Like lots of Tylenol. You can only take Tylenol with the Plaquenil as they work together. That is it. Everything else I am allergic to. uhhh, oh.

Now after years of Tylenol abuse the nurses said to "watch it on the Tylenol". I have learned it is real bad for the liver. Plan 'B'.

While living in Hawai'i I had two docs out of three tell me to drink in the evening. The other one said to eat oatmeal cookies. No, not get smashed ..which is actually what your mind would like to do, but to have a little glass of wine to cut the pain. The key here is you are trading the Tylenol for the wine or whatever you decide to down. This works for me. But I am by no means telling you to go out and get a shopping cart of booze. If I do not drink at dinner I do find myself taking Tylenol "as needed". I take my other meds in the morning away from the alcohol. The thing is the alcohol is also a depressant. Hmmmmm.... don't need that. The constant pain I am in has that all covered. And it isn't great for my liver either. Balance is the key. Not too much of either and I then think, 'do I really NEED this'? I have become aware that I fell into the habit trap of medicating myself when I maybe could do with out, but was just following routine.

Better plan 'B'.

Try acupuncture My friend Gina Halsey in Lawrence, Kansas treats me for pain and IBS (irritable bowel syndrome) and whatever else she feels I need. I haven't had a session in a while, but one session gets me a long ways down the pike. And I take way less Tylenol because of it.

Try homeopathic remedies My friend Diane Miller in Nahalem, Oregon has been tweeking me for years for my lupus. Then she came across a remedy that claims to flip the immune system back and got it for me. That was a year go. It takes time to reset your system I am told, but this is way better than what the average medical professional has been offering me. She does other remedies for other issues including the IBS. I sleep better and also drink less because of it.

WORK OUT All docs will tell you to get a routine your body can manage. Such as yoga, walking, biking, swimming, weight lifting, Tai ji is excellent. The one thing I miss about living in Hawai'i most is that I could get into the salty ocean. Swimming, boogie boarding, snorkeling, when I am in water there is just no pain. It is marvelous! In fact they are using water as a treatment for the wounded returning from war, such as teaching them to scuba dive. For me here there is no ocean and snorkeling the muddy Kaw in Kansas is just not on my list.

So how is your mind dealing with all the roller coaster ride of constant pain? If you have ever watched a sports class with children and adults participating in the same routine the kids will step out and take a break. When they start to have muscle pain their brains say 'okay enough' and they go sit a bit, then they naturally get back in when it stops hurting. We forgive them that because they are indeed children. Well, unless they really want to just go sit out then the parents get all huffy. The adults will PUSH themselves harder. hmmmm. Look again and you see the different levels of the amount the adults are able or willing to push themselves during the pain level of the sport routine. Everyone has a different level of a pain threshold. Yours is just part of who you are and so learn to find what works for your body.

I have always managed pain well. I actually focus on it and feel it and that seems to dissipate it. If I try to ignore it that doesn't work for me. Unless I am busy. My nature is to be so busy and focused onto something else that I am not aware of the pain. This is the 6-10 pain threshold, not the 28.... And there ya go, that is why taking up the art of oil painting last year is at the moment helping in managing my pain. It is giving me pure pleasure that triggers dopamine into my brain just as exercise does and makes me all happy. Like the best high ever! It is new and exciting because I have to teach myself the medium. I know how to paint and draw, but the oil paint is very different than watercolor medium. So I am totally sucked into it and focused. I am passionate about it. It doesn't mean I do not have pain, but I am able to push through it and doing something that allows me to be productive which then makes me feel good about myself. That is positive and good energy.

If the 'focus on the pain' method intrigues you then try reading Full Catastrophe Living by Jon Kabot-Zinn.

Cameron's blog

While house sitting in Hawaii in April I met lots of people. Across the Kaiwiki road from me was the land and home of Kaleo and Kalewa and they are growing pineapple! REAL Hawaiian pineapple. And working for them is Cameron and he lives in a yurt on their land. Talk story goes that Cameron met them in Colorado. Here is the link to Cameron's blog and and a link to the photos of the paintings I did of their homes that he so amazingly posted onto the blog! It is not easy doing paintings in Hawai'i because everyone has a dog that then starts to bark and then you get to meet the dogs owners and explain just why you are making their dog bark. I met lots of people and dogs in Hawai'i.....

http://cameronomicon.blogspot.com/

http//cameronomicon.blogspot.com/2010/04/first-time-for-everything.html.

Getting Started

My first idea behind doing a blog was to relate some of my own true experiences living with SLE Lupus. A second idea was to encourage anyone to find that one thing they are passionate about and start doing it. The results I am hoping for from this blog is entertaining you with stories of my life while living 5 years in Hawai'i, then moving back home to Kansas. Hopefully through them also providing an information board for those I wish to help who are living with a chronic illness. Personally I would like to volunteer, but I need to remain isolated so having real contact with people is not the best situation for me. Maybe this blog will put some information or an idea or a link out there to anyone who needs support. Secondly, I want to show you my art that I am passionate about.

Now that I have created this blog thing I am intimidated. I have never read a blog before. Actually I have never tweeted either. At one time I sent emails to my friends about my life in Hawai'i and they clamored for more stories. It was just daily stuff to me, but most have never lived on an island and it was interesting to them and my life can be especially bizarre. Such as my thieving friends Frank and Annie. Ah, we will get to them later.

So I am learning to set up the blog page and organize what I want on it and.... nothing. One little posting for days. After thinking about this blog block for several days my dear friend Ann Zeddies, a great science fiction writer, encouraged (panicked) me by saying she would send people to it. So the more people reading the blog then better the hope of actually providing useful lupus information to a person looking for it. I decided to focus on the first goal.

INTRODUCTION MAY 19,2010

Aloooha!

My name is Jennifer and I am an artist. I am also a person living with a chronic illness or two or three. It once was that my illness was a separate part of the way I was living. It consumed all of my life by becoming the core of my being and everything I did revolved around it. If you have a serious, even life threatening illness you understand how this happens. Or even with a flu or cold for a few days then quickly your daily life's routine is limited according to how you are feeling. You have to manage your illness so that you can function the best you can.

Now things are changing. I still have SLE Lupus. I still have Fibromyalgia and IBS. I have arthritis that is deforming my joints to the point of requiring surgeries. But now I am in charge because ...... of lots of reasons. Those reasons are all intertwined and connected. They created new events that caused new situations and I am still learning daily how to manage my chronic illnesses. And now my artwork has become the cornerstone to my health. It is changing the perspective I have about myself and my future.