Monday, April 22, 2013

Health Activist Writer's Challenge day 2 (

Today’s Prompts:
  • Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
  • Share links a few of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.

Today's post may be a little "quick" and to the point as I am not feeling well today.

1) I want people to know AOSD exists, because really unless you have it or a family member has it people outside the field of rheumatology really do not know about this disease. We don't have a ribbon, there are no 5K runs for Still' most we are a little "blurb" in a book about rare autoimmune greatest hope is to see that change in my lifetime...once no one knew what Lupus was either...This is one thing that we do have the power to change ourselves.....instead of hiding our illness it's time to tell the world about it

2)The fever- this is my personal kryptonite  When I say I have a fever I do not mean it as in I must be getting sick and my temp is 99.9.... OH HOW I WISH..... everyone with AOSD does get fever episodes, just some of us worse than others...fever is my WORST symptom and always has been. I have 2 fever spikes a day and both times they exceed 103, many people think that because I run a fever twice a day every day that "their 99.9 is worse than my 103.1" NOT TRUE, yes I run a fever daily but it really isn't like the pain can say whatever you want but the body reacts the same way to a fever that high no matter who you are.... Stop and think if you had a fever that high how would you feel? That is how I feel ....every day....twice a day, the only difference is I know mine WILL go away in a couple hors and I know when it will come back as well.

3)Fatigue-this is a big one folks.... There are some days just brushing my hair is enough to tire me out... I do what I can, when I can. I am a mom, a wife and a dragon slayer. Most days I can balance those things pretty well and some days I can't at all.... I will always put my limited energy into being a mom first, everything else comes in a far second. I am the first to admit my house is a mess a good deal of the time...when the toddler naps I rest or prep dinner to go into the oven and that's about it. Once upon a time I was a great multi I do what I can and everything else can wait for my hubby or my adult daughters to help. I can be fine and then all of a sudden go into "shut down mode" thankfully this does not happen often and I have learned the signs of it to some degree...but when this happens my body has had all it can take and I need to doesn't matter where I am or what I am doing at the time when this happens I am down for the count. We have learned that if I rest more and stick to a schedule I can avoid this most of the time.... but my hubby knows if I say I feel like that he needs to stop what he is doing and come home ASAP to help with the munchkin.

4) Stress- I know you have all likely heard that auto immune disease are very sensitive to stress.... and you likely say "that's BS" I know when I was working in health care before I got sick that I "knew" stress made things worse and could cause a flare but I don't think I ever believed it really or understood what it meant.... A simple argument can cause my temp to spike over 104, dealing with stressful situations can and will cause my joint to swell , make my rash pop out almost a neon pink and make me so exhausted that you would think I just ran a marathon. I KNOW it sounds crazy, but it is 100% true. Typically within a coupe of hours of "the incident" that caused the stress I am a pathetic looking mess because my dragon came out to play...

5) making plans- There is no way to know in advance how I will feel on any given day (well I know after chemo or biologic infusion I will sleep a lot) I can't put enough emphasis on this.... It dose not matter how much I want to do something, plan to do something, am expected to be somewhere, if it is a holiday, a birthday.... I very well might have to cancel our plans at the last minute ..this is not because I don't like you, don't want to go, I am not lazy, I am not a recluse who wants to stay home.... I just simply can not how I am going to feel in advance.... I have learned over the years to just not make plans with anyone other than family because I lost several friendships because I would have to cancel plans like a lunch date, girl's night, shopping...anything really....Do not take it personally it is not a reflection on how I feel about you personally or the activity it's self.... it just means I am not feeling up to doing something at that time...BUT, I always welcome visitors to come see me even at my worst I can lay on the couch and watch a movie with my friends.

I will include below a couple of links to stories written about my journey with AOSD

the first is a letter I wrote to friends and family shortly after my diagnosis. click here

the second is a story written by my husband about his perception of the journey to diagnosis and treatment as a caregiver. click here

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