Principles in Food

Starting last Sunday, I decided to make a shift in my eating pattern.

A shift I have been pondering, pondering very hard (kinda the way I think of exercise), for the last year.

I have shifted to a more vegetarian lifestyle. I've been doing this more and more over the last year. But I made the commitment yesterday.

Research shows that a more plant based diet helps with the inflammation issues in Lupus. Although I will need to avoid alfalfa (though I don't eat alfalfa on a regular basis) because there are properties in it that can trigger lupus flares.  Which would be one on of the reasons to restrict any product that might have ingested alfalfa. (so long anything that moo'd or bleet'd).  There is nothing that says I can't enjoy anything that swims. :)

My choice is guided by the following principles:

And again, verily I say unto you, all wholesome herbs God hath ordained for the constitution, nature, and use of man—

Every herb in the season thereof, and every fruit in the season thereof; all these to be used with prudence and thanksgiving.

Yea, flesh also of beasts and of the fowls of the air, I, the Lord, have ordained for the use of man with thanksgiving; nevertheless they are to be used sparingly;

And it is pleasing unto me that they should not be used, only in times of winter, or of cold, or famine.

All grain is ordained for the use of man and of beasts, to be the staff of life, not only for man but for the beasts of the field, and the fowls of heaven, and all wild animals that run or creep on the earth;

And these hath God made for the use of man only in times of famine and excess of hunger.

All grain is good for the food of man; as also the fruit of the vine; that which yieldeth fruit, whether in the ground or above the ground— (D&C 89)

Lupus was not something I chosen to have in my life. I'm still struggling with how to cope with it. I need to be smart and sensible about my choices.  I can work to make my body as healthy as possible.

I choose to give my body a fighting chance. That includes the food I eat, utilizing my faith, and not beating myself up to badly over the course of this life long experience.

My First Lupus Flare

Last summer was hell.  I'll be honest.  I was so miserable, that if I was a suicidal person I would have ended it all. For the record, I am way to stubborn for that kind of action.

I had no idea what was causing my symptoms, every doctors visit left me angry and helpless. My blood work was inconclusive to my general practitioner.  The one ray of hope was that she did listen to me, she never wrote me off as being a hypochondriac.

After exhausting all our options (and taking copious documentation) she sent me to the rheumatologist.  He ran his tests compared them to my previous blood work and started connecting dots.  Then started me on Plaquenil. So far, I haven't felt as crappy as last summer.

Why do I revisit that time?  Because I realized that I was living through a 'flare'.  A long, vicious, difficult flare. The conclusion is, I'd really like to avoid them as much as possible. please.

My other great enlightenment is that Lupus is a highly personal disease, yet, to get the funding need the LFA needs to try to standardize it.  Which I do understand.  The LFA blog just published an interesting article regarding how the result of a 4-year international study has just defined what a Lupus Flare is:

A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.

I have to give the research teams credit for keeping it as flexible as possible to take in account the individuals that suffer from this disease.

I'm still figuring out my limitations with this new circumstance in my life.  I often push myself to hard and far.  Honestly, I'm stubborn.  I have work to do, goals to achieve and an awful lot of life to live.

And There's Progress

Tonight I had an interesting conversation with a family member who has been very resistant to my Lupus condition.  Denial would be an accurate description.  I've not made a huge issue with her, mainly because I've recognized that I can't change a person's mind. I can only make changes in my life, my perception, my reactions.

In the course of this particular conversation, not only did this family member acknowledge my Lupus, but the limitations that came along with it.

Inside my head, I was doing cartwheels and shouting 'HUZZAH!'. To the exterior observer, I was calm and collected not letting on to my inner joy.

This is a huge turning point, in our relationship. We talked openly about how Lupus was affecting me.  How the medication I was currently on was helping me, but not necessarily taking care of everything.  This was the first real, productive conversation we'd had about Lupus since September.

Will there be set backs?  Oh, guaranteed.  That is the nature of relationships.

Does this give me hope? ABSOLUTELY.

Patience is the name of the game when dealing with a circumstance that affects your entire spectrum of life.

Lupus & Work

My new reality is really my old reality.  No much has changed in my grand scheme of things.  My day to day living experience is still up and down, good and bad, etc.

It's Life.

What has changed is my understanding of the 'why' of my physical condition.  There is a certain satisfaction knowing that I'm not losing my mind.  For a while there it was a close thing.  It's a relief to know there is a reason for all the aches and pains.  That, through patience, I'll be able to manage this.

How I deal with work, now that's a challenge.  Generally, I can make everything work.  But I have a small problem.  I'm a type A personality with a definite overachieving issue.  I want to get the job done.  I like to work.

My acknowledgement of Lupus is forcing me to re-evaluate how I do things at work.  How many responsibilities I take on and when I ask for help.  I'm not very good at asking for help.  The LFA website has a great article about making my workplace more manageable.  I'm slowing getting the changes I need implemented. Re-jiggering my workspace to be more ergonomic, working with facilities to help me out with the glare.

All this is something that I can ask for according to the ADA.  I'm not planning on stopping work anytime soon, so I have to find a way to make my work environment as friendly to my current situation as possible.

Yes, I have Lupus and I'm learning to ask for help.

'Tis the season .... For the Plague!

Sneezing, coughing, sniffing can be heard across the floor at work.  In elevators, I waiting for that stranger to sneeze without covering their mouth, exposing everyone to their icky germs.  Seriously, what DID their parents teach them as a child.

I've never been a particular germaphobe, but I do know that I have been more susceptible over the last several years to the bug du jour.

As a kid, even a young adult I had a really strong immune system.  I could pretty much survive anything. I only recall getting the real flu once in college. Trust me projectile vomiting in the middle of the sidewalk because I wasn't going to let no stinkin' bug keep me from my mid-terms was a memorable moment in my life.

Now when someone sneezes in my direction, I throw hand sanitizer at them, followed by tissues and a threat of violence if they come any closer (I feel that any jury would find in my favor if it got that far). I'm considering wearing a mask for the next 6 months out in public.  People would avoid me then! :)

That brings me to today.  The annual Flu Shot extravaganza.  I didn't use to get them.  Frankly, the years I got them I seemed to get the flu more often.  Now?  I get them every year.  I usually have a little reaction to them but the end result outweighs the initial inconvenience.

The Lupus Foundation of America recommends the Flu vaccination as well as the Pneumonia vaccination due to the suppressed immune system issues of the Lupus patient.  The key is that the vaccination can not have 'live virus'.  The nasal spray vaccination has this.  So a shot is necessary.

So many people come to work sick.  I'm much more aware of the impact of one cough, sneeze or runny nose.  I can't be responsible for bringing the plague to work. Frankly, I expect the same responsible behavior from the people I work with.

Headache, Headache Go AWAY!

When I first got diagnosed, I went on a research binge.  You know, make a list of all my aches and pains and see if I could sync them up with a corresponding Lupus symptom.  It almost became an obsession.  My mother, bless her heart, just looked up symptoms to warn me of my impending doom.  So, I had to put my foot down and say only one person was allowed to obsesses about my illness - ME!

Back to my headaches. I'd been suffering from headaches that ranged from annoying to disabling most of my adult life.  Good days have always been a dull throb.  Bad days - lightening bolts ricocheting around my head and flying out my eyeballs.  Over time, I just learned to live with it.

Learning to live with the constant pain has upped my ability to tolerate pain, which had its benefits. But the reality is, I think it just delayed my diagnosis.  After all, if I can function it's not so bad.  (yes, you can smack me on the back of the head, J)

Imagine to my surprise, part of the Lupus universe of symptoms was the 'Lupus Headache'.  Yeah!  That meant, that on top of my body being sore and aggravated. The constant headaches were not really stress related.

So, that was the good news.  The bad news is that the research is fairly non-conclusive on cause or over all treatment.  A common theme is to work on reducing over all stress (just say 'NO'), work on eating healthy, increase your exercise as you are able.  

I'd like to emphasis exercising as you are able.  Yes, I know that increased exercise is overall beneficial, but when you've worked a full day, taken care of your basic maintenance items and then add exercise in the mix -  all I can say is be realistic.  Don't plan for a marathon, take a small step at a time.

I'm not planning on my headaches to miraculously to go away.  I've lived with them for so long, and done so many things despite their impact on me.  But I hope that one day, one day I'll be free of them.

Open Enrollment Circus

The Open Enrollment Circus has started again at work.  I always pay attention, but this year I'm paying particular attention.  I now know why I'm feeling like crap.  I now have to predict the future and guess what my health costs are going to be.

On top of that, my company has narrowed down our options to an expensive PPO with an FSA or a 'Premier Choice' with HSA option that is half the cost.

I have no idea what my costs are going to be.  I have to prepare for the worst.  In the Premier Choice, I have to pay for everything up front until I meet the $1500 deductible, but everything (doctor visits, prescriptions, dentist, labs, x-rays, etc.) everything goes toward it.  I'm pretty sure I could rack that up in a heart beat.  But, then there is the cash flow problem.  While the company is giving me 'seed' money to get me started, I'm terrified that it's all going to go wrong in a short amount of time.

Or, I can stick with the plan that I currently plan and be nickeled and dimed to death with hidden costs.  I'm so frustrated.

Oh, and let's not forget the governments contribution to all this.  They've sold us out to the pharmaceutical companies.  Soon, I'm sure the insurance companies will be 'XYZ insurance sponsored by ABC pharmaceuticals'.  The government is supposed to be doing things for the good of the people, NOT for the good of their own pockets.

I just need a chair and a whip to fight my way through this morass.

Puzzle of Lupus Teleconference

Just finished with a teleconference with Dr. Philip L. Cohen, M.D., Rheumatology Section Chief, Temple University School of Medicine sponsored by the Lupus Foundation of America.  


He went over definitions, common treatments and possible treatments coming down the pipeline in research.  He had a nice PowerPoint that covered all the major points.


The thing that impressed me was that he stated up front that this disease has a tendency to be fairly individual. While it can be identified as an auto-immune disease, the symptoms any individual lupus sufferer might have may differ wildly.  


Dr. Cohen emphasized how important the relationship you have with your doctor is.  He also talked about how critical it was to be treated with the correct medicine at the right time, and to not be 'over-treated'.  As 'over-treatment' can bring its own set of issues.


Over all he emphasized that despite the flares, a lupus sufferer can lead a normal life.  


For me, as a recently diagnosed lupus patient, I find it comforting that there are doctors who are willing to have open dialogs. I have so much to learn. I know that the resources are out there and I am grateful.