Don't Quit My Day Job.............. or Ann's Healthus Frustratus

So this week’s theme is: I have had to come to terms with the fact that if I had a regular day-job I would be disabled and unable to work. Being self employed covers this gap - it’s slow and you don’t notice just how much of your day is being used up just approximating health. Last week at the asthma doctor it just all hit me. I have a condition with that sudden flare up hives and breathing that could actually kill me and in order to survive it I need to take almost hospital or beyond hosp level meds just to approximate the things other people do on a daily basis…. You know, exotic things like BREATHE.

okay, getting a handle on this s**t...... with whatever flared my autoimmune stuff starting this june/july thing here is how things look daily now:

I have been a literal mental train-wreck getting things lined up this last week or so since the breathing flare, hives flare and general my autoimmune system going even more haywire than usual

I am pretty much grieving the really feeling good I had gotten to when I was strict on the foods and detox and at the place where lots of things were feeling good and I was just focusing on building muscle - i have gone a bit backwards this last year.... after an 18 month moving up and forward and better

I think doc was wrong when said I could start adding in regular food stuffs or at least in part - and that I really just can't AND stay off the level of steroids or other meds I want to keep low - other people can. I don't think I will EVER be able to. not without destroying my body w prednisone

I don’t want a moon face puffiness instead of my real face and I don’t want my connective tissue to melt and slip faster than usual …. Life: Please put my skin back where Ieft it.

with that AND the early menopause thing - which is now completely on manual override to keep a libido and not become a dried up husky .... (I am NOT ready to downshift that part of my life) but it's been a doozy to manage....

tween the steroids and the estrogen I can't cheat at ALL on grains/sugars...

and I know people love me no matter what weight I am at - but the clothes that were fitting I miss, and the weight sticks "wrong" in some places, just doesn't feel like my own body - but tween that and steroids I am ... disheartened. and my skin hurts from the pred. meh.

I AM getting back to my walks - Nathan and I are just basically not starting anything new until I get back to the muscle building regular walks and the dvd..... I LIKED feeling strong and better...

so that's the backdrop I have been working with/on/juggling

but the one that's really hitting me hard - esp after looking at my matrilineal family history of prednisone needing health things

is whatever this immuno thing is: I am still researching the "shot" xolair but am not at all sure it's worth the risks esp if the risks are exactly the thing I am already trying to work through

I will be going in and talking to my asthma dude in more detail now that I have had a chance to do some reading, I will ask him the questions and haven't completely ruled out the shot

BUT

at home, working with over the counter stuff  - it appears that if I just ALWAYS stay on the H1 antihistamines - I can function with less fear of the unexpected death of something setting me off, and keep steroids low

and with oral pills - I can STOP taking them and don't need an epi pen because the medicine might cause a worse reaction

but here is what it looks like to "be safe" and go outside, hug people, breath outdoor air and basically not live in a bubble

2 one a day clariton - morning and evening

2 benadryl every 4-6 /day as a base - with emergency liquid benadryl IF something flares me on top of those (and yep, it can happen - fragrance, soap isle, certain smoke and dryer sheets.. and anything that happens to smell yummy and lovely on dudes - (I LIKE polo and drakkar rofl)

but this and prednisone - spaced throughout the day even though that isn't what they say should work best - it just plain does - at my best I can do 6 am and just before bed - but for REALLY good control and not needing the nebbie - I need to be taking about 5 mg 2-4 /day UNLESS something sets me off - then more

I am sincerely hoping this fends off the October missed work bronchitis

but DAMN

it's a roller coaster:

first thing in the morning 5/6 am - boot up endocrine and thyroid system

first thing once up in the am - all the h1 ones sleepy makings

then boot up female systems with HRT (and prometrium which is also sleeping making)

add prednisone

add SHITTONS of coffee (just not going to be able ot not coffee on these antihistamines)
the immodium to slow down the coffee and the prednisone..........

then........... if too much pred needed and / or nebulizer, 1/2 xanax to stop the shaking so I don't look like a tweaker to my clients

and before people ask -the coffee actually slows the shaking instead of making worse..... I wouldn't think so myself but it does - the coffee/1/2 xanax allow me to somewhat approximate normal

THE biggest challenge is getting all of this timed so that I can WRITE and communicate with my clients and run my business.

I can do bodywork just fine.......... but DAMN it's hard to think and process through the "turn central nervous system off H1s", boot up thyroid ..... loading... boot up female system - estrogen my brain LIKES, prometrium makes the wanting to cry and the sleepy cuddle nesting (good for evening but damn hard to focus on writing with that in my system) then the pred if needed, the coffee to push through all the everything else - it's the glue that levels the things.... and then if needed the xanax.. so I don't look like I am on all the drugs that I am on just to be able to type a damn sentence, handles phone calls and emails and do all the thinking

if I didn't have a woofer pack to feed I would probably be seeking a medical opt out just let me go home and sleep pass in life right now... but I have woofers and enough for me to stay motivated and get my foggy little brain ass out of bed.

Would my life be easier if I didn’t have all the woofers to feed? I am not sure I would have the motivation to get up and get better and push through this if there WEREn’t fuzzy faces needing to be fed.

But I damn sure wish I could just take 4-8 weeks off to rest and reboot on these meds and that technology had caught up to this…. I am just roughing it til science catches up and trying to keep treading water until I can actually find a way through this. Come on star-trek level medical facilities, I am ready for you.