The flu and other musings

I have been sick…I mean really sick.  For over a week now I have had the creeping crud, the ishy ick, they vomitous mass, the grossness personified, the flu.  It has attacked every oriface (is that how you spell oriface?  If not I just spelled it wrong twice, hee hee!) of  my body.  I have had fluids spilling from every crevice and opening that I own.  There have been fevers, blisters, sneezes, wheezes, blowing, snotting, throwing up, coughing, aching, paining and general disgustingness for a solid week.  Oh, and sleeping.  A Lupus fighter often worries when sick of the gravity of the illness, and how it can affect various organs of one’s body.  I have been relatively lucky as far as things like that go.  This time, however, the fear was there.  I was SICK!  And I was scared.  And I was disappointed. 

Since early summer my hubby and I have been preparing to be volunteers at the big super bowl here in AZ.  And this was the week.   But, here I was sick in bed and couldn’t move.  We had worked so hard, done all the background check stuff for security, stood in all the credential lines, sat in all the training meetings, done the meet and greet of team captains, picked up our uniforms and prepared for our shifts.  And through out all of that we had the great opportunity to volunteer at some great outreach experiences around the valley.  But it had been a long road and we had waited and anticipated the arrival of this week.  For me it wasn’t to be.  Then I learned the cold hard truth of the real world of the rich and famous.  Two weeks prior to the kick off of the big event an add was placed in the paper looking for 1000 “pretty” people who would be paid 3o bucks an hour to do the things that we volunteers had been preparing for months for…all they had to do was look pretty.  Send in a picture it said.  Reality hit hard.  We were grunts.  We were the lowly, forgetable faces, unthanked and unpaid.  We were the ones who stood for hours waiting in lines for credentials, had our backgrounds checked up and down and back and forth before we were cleared to work at the NFL experience…..cuz we weren’t pretty enough to just be “chosen”.  What a sad sad world we live in.  At that moment…at that very minute…I was almost glad to be too sick to fulfill my commitment to ‘volunteer” as an “ugly” grunt at the Super bowl.  Congrats anyways Giants!

9 thoughts on “The flu and other musings

  1. Lorri says:

    Systemic Lupus is not fun, and I adhere to a strict diet. Every once in a while, very rarely, I let go and have a treat, but I feel it the next day, sometimes the next hour.

    My organs become so inflammed from what I have eaten, that I shouldn’t have eaten, that it isn’t worth it.

    I realize you told Bill to eat his pickles if he desires to, but, by the same token, one little bit of something, for a heart patient (me), diabetes patient (me) systemic lupus patient (me) can put us in the horrendous throes of an episode that could last for weeks or months.

    I walk around with an inflammed heart and intestines, daily. What I eat matters, gravely so.

  2. Lorri says:

    Oh, I have kids, have a house, grandchildren, work, have hobbies, etc., life is busy, and as much as I can control it, lupus will not get in the way of my life.

    Peace to you.

  3. lwayswright says:

    I wasn’t telling anyone to eat anything that makes them ill or causes them pain. I have lupus I know how that is. What I was saying is that sometimes doctors tell us to give up our lives because of our illnesses. And in reality the only ones who can really know what makes us ill or what we can personally handle on an occassional “i need a pick me up” basis is ourselves. And, we can’t stop living because of a disease. I get tired of telling me kids “no I can’t do that cuz I have lupus, no we can’t go there cuz I have Lupus”. I had to come to a point of learning what I could do in moderation, even if it meant a bit of dicomfort the next day in order to make memories with my kids, with my spouse, in my life. Believe me, I have discomfort, I have days that I don’t want to get out of bed. But my life cannot and will not stop cuz of lupus. I won’t let it. that’s why I call my self a Lupus fighter and not a lupus survivor. I will fight it tooth and nail until the day I die!

  4. Lorri says:

    I am an avid believer in doing. I exercise, cardio exercise, strength building exercise, etc. I walk 2-3 miles daily.

    I don’t tell my kids no, my kids range from 35-41, and totally understand my issues. And, if at moments, I can’t participate, well, I can’t. They understand. They understood as young children. Life is important, health is important. My father died at the age of 45, a young man, died before his time, and nobody knows more than me how precious life is, as I was a child when he died.

    My systemic lupus erythamatous is quite serious and severe, as it not only has affected my skin organ, but my intestines, my heart, my lungs, and they are in states of constant inflammation. Yes, let me say that the lupus that has given me dyastolic left ventricle heart disfunction and inflammation is not fun. But, my life goes on, because I say it will, and nothing will stop that. I am a fighter and a survivor. I have survived with lupus for 30++ years, and fought lupus every step of the way during that time. For me fighting is helping myself stay well in every aspect. And, at my age, I will not eat myself into discomfort, which is not to say others should follow suit.

    Lupus is not the same for everyone, what you endure, is not necessarily what I, as a 64-year old woman, endures. My lupus has progressed dramatically. Discomfort to me, due to eating, is not worth it, and it’s my choice. I eat a diet that will leave me comfortable. If one calls that not fighting, so be it, but they don’t really know me, and know how I have fought systemic lupus erythamatosis every inch of the way. But, it is fighting, fighting for my life to continue, and give me more years with my children and grandchildren.

    I don’t really need food pick-me-ups. Some of us do, and that is fine. I don’t need any pick-me-up. I am an extremely positive person, and my children and dear friends always tell me how they appreciate that and appreciate my strength as a human being.

    I have lived 20 years longer than my father, and I take advantage of every second of my life, and am grateful for such. But, by the same token, I am a fighter and have fought to survive as long as I have.

    Fighting…let me tell you, I finished the 26.2 mile Los Angeles Marathon with SLE at the age of 50. That is fighting, that is determination, that is proving that I fight long and hard and won’t let SLE get in the way of my living. It was a goal of mine, that I proudly accomplished.

    I live my days to the fullest, and have helped others through actions, contributions, charitable contributions, my published poetry, my photography, my writings, my family memoir.

    Life always is at the foremost of my fight and mind.

  5. lwayswright says:

    I guess that was the point of what I was saying. I could never run a marathon with my lupus. My joints, back, and body would never take it. And bein in the sun for that amount of time would kill me…how I live in AZ is beyond me. What I was saying is that one should never give up on life, give up the fight just because a doc says that you have to give up. I have given up a lot. I have had lupus since I was 17 and I am now 44. Although I was only diagnosed at the age of 38, I lost 2 babies, had three horrible pregnancies where I almost lost my own life as well as the children I carried and life has been hard. But there are certain things that I will endure in order to live. I do know what my body can and can’t take, what foods I can and can’t live with and how I will pay for it the next day. Lupus has affected my lungs, kidneys, I have three blood clotting disorders and am on multiple medications. I get dibiliating migraines and the list goes on. But I still find ways to go to the water park in the summer with the kids…creative manuevering of the sun…I still go to work where flourescent lights kill me…I use lamps…etc etc. That is the point of the fight. I run the illness. It doesn’t run me!

  6. Lorri says:

    That was my point, too, and it goes to show, every lupus patient is different, and can’t be categorized or stereotyped. My body, joints, back, legs ached, but it had been a dream of mine for decades, and once my children were adults, I decided to realize my dream and goal, and I did. My adult children couldn’t have been prouder of me. I can’t stay in the sun long, either, ever. That particular day there was no sun in sight. It rained and was humid, and that helped me a lot. If the sun had been out, I would have been fine, I had long sleeves, long pants, uhv/uva proof, a hat with a brim, and had my face protected. Not much of my body showed other than my nose. LOL. I am basically allergic to the sun, and have been since I was in my teens. I had an umbrella with me, and would have used it to protect myself from the sun, that is what its purpose was. I never used it for the rain.

    I lost two babies, also. Life has been hard, but I am grateful for my life. Yes, those migraines, a constant source of aura and pain. I meditate a lot, besides exercise. I take multiple medications, but, first and foremost, I control my illness. There are medications that I will not take, and stopped taking soon after beginning them. I refuse to be a long-term medication side-effect statistic. But, each of us is different. We are all dying the minute we are born, and I would rather die for other reasons than side-effects of lupus medications, and other medications. I have to take heart medications, both to prevent heart attacks and/or strokes, but also for inflammation of the heart. I refuse to take prednisone, because it made me violently ill. I know my body better than any doctor or anyone else, for that matter.

    My intestines are a for me…food is a form of survival, not a means to treat myself to something good. I am long past that, I am not willing to pay for it through the after-effects. But, that is my choice, and my way to fight and control my disease, and keep myself as healthy as I can possibly be.

    I run the illness too, and it has never in my life run me. I was diagonosed over 30++ years ago, but most of my doctors suspected I have had it since I was in my early 20s. My case file would fill a room.

    I am a very upbeat person, and refuse to let SLE get me down or control any second of my day. I am a survivor, but a survivor who fights to overcome my medical adversities. I don’t just vegetate the hours away.

    It sounds like you are the same way.

  7. lerato says:


    I was diagonist with Lupus since last year.
    I leave in South Africa and no one seems to understand it. There’s onl my reuhmatologist who really knows about it. I cannot even enjoy making love to my partner like before? But I am not letting this Monster to take away my life,. In South Africa there are no support groups for Lupus, the only support I get is writing to people I meet on the internet that are suffering from the same desease. I cant say I am scarred but I take good care of myself.

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