A Gardeners Forum Forums General Discussion The Banter Hall my health

i figured it was time to share why/where i've been. just so things would all be on par.

some of you know more than others that during the last 2 years, while cindy and bill were fighting their life battles, and loz and i were the admins in charge, i was also fighting my own health battles.

it started 2 years ago as of the beginning of this month, i was working on my car one day (i'm the mechanic in the family ) and the next day i couldn't move my hands. no big deal, sore from working on the car, right? except i had flowers for a wedding to do. ok, i'll manage.

by the end of the month, i could not dress myself, could not cut my own food, could not do much of anything. my dr, who was very understanding, gave me weekly steroid shots so that i could have 24-36 hours a week to work on wedding stuffs.

my boss said if i could get to work, i could continue to work since 80% of my job is either mouse clicks or phone calls. they gave me an assistant to do all the writing, filing, stapling, or anything else i needed. lunch was brought to my desk.

my dr gave me my handicapped sticker for my car, and sent me out for major referrals. the first specialist was a dud to put it mildly. he dithered between fibromyalgia, lupus, rheumatoid arthritis, and Lord knows what else, 'cause i don't.

he decided that treating the fibro was the only important thing, and i wasted 6 months with that dud.

when we finally got a good specialist who cared enough to find treatment options, he declared that RA was part of the culprit, but there were other things going on. he started me on a chemo drug, changed up some of the other meds, and started on a comprehensive testing schedule.

40 pounds lost in less than 4 months, half my hair falling out, 2 rounds of pneumonia, and a major drop in my white count took me off the chemo drug. rats, i was starting to be able to dress myself again.

the new meds (including more prednisone than i am comfortable with) he substituted worked great. i could dress myself more days than not, my hair stabilized, my weight stabilized (well, i could have stood to lose a few more) and i was on my way. except i started breaking out. not fun. the break out looked like i had burns on my face and chest from a rogue curling iron. open sores, losing my eyebrows, etc.

when i finally got into the second specialist, he did a biopsy (which promptly got infected ) and told me "the biopsy will prove what i already know. you have the worst case of lupus i have seen in a long time" and, the medication you were on has never been reported to cause this kind of breakout, so we will have to report this to the appropriate agencies.

now, i am waiting for the biopsy site to heal, although i have the results. lupus, as we knew, ra, as we knew, and an assortment of other things including lung damage, and such.

now, all that said, if i don't answer your post, don't take it personally. if i do answer your post, or post right behind your answer to someone else's post, i'm not trying to one up anyone, i'm just enjoying that i can post. some days, i just can't. i'm posting when and where i can as appropriate and doing what i can in the background in the meantime. the good news is i'm not terminal, so y'all are stuck with me!

THAT is news I like to hear----That we are stuck with you----


I appreciate your posting all of this info, so to help us all understand what is going on with you. I will pray that things in your life straighten up ASAP.

Prayers and well wishes to you my friend.

thank you carol.

i did forget to add. with all the meds, and illness, and other such, i can never garden in the sun again. no more sun for me ever. you should see me bundle up just to go from the car to the house

Jiffy....so glad to hear that things are finally getting figured out. I will be praying that they continue to get better. PS....being stuck with you is a good thing!

OH my I am so sorry for that. I guess up are just going to have to become a house plant keeper. I would like to think that windows with the window film on them would protect you from UV rays, so yo ucould go by them to tend them, right???
I just looked at my paper on the window film I used, and of course all THAT kind of info was on the box----which I did not keep.

I DO have a web site if you are interested in looking at it.--I think I bought this stuff at Lowe's

yes, i have to get some. but i will do lots of gardening by the light of the moon. i had time with m tonight outside. first time in a while.

Jiffy, I really don't know what to say except, get well soon, and you've got my prayers and best wishes on your side.



not sure if this is so appropriate to post, but the picture you've given me is yourself wrapped head to toe in winter scarves trekking though 80*F+ sun getting to your car and trekking into the grocers to pick up you groceries. i'm sorry if it's bad humour...

not bad humor at all, and not far for the truth! only long sleeves a hat that covers me from the top of my head to my shoulders, and jeans in 95* weather!

That is a GOOD idea!!!
and a cool-(as in not hot and humid)- one to boot.
I have NO idea why I did not think of that.

So now I will have a visual in my mind of you going from flower to flower care-ing as you go from one ot the other, by moon light.

I'm glad you have found a doctor who was able to figure out what was ailing you. I remember when you were seeing the "dud" doctor and then I kind of fell off the forum for a bit. I do hope that they get it under control soon, and like everyone else I'm glad we're stuck with you. Take care of yourself and you, as always, are in my thought.

hope you're taking vitamin D.

Good point "Nurse Majors"

yes. they started me on that when i first got sick, that was one of the things they found, my vit. d level was "off the charts" at the bottom. way, way too low.

Jiffy - I am glad you are taking vitamin D. I am also sorry you are having to change your lifestyle from this point on, but it sounds like you have some very good ideas. Night gardens can be very beautiful! Just please be careful about mosquito bites while you are working out there in the evenings.

It's funny - I tested low for vitamin D back in February, which surprised me since I am a sun addict. I am either gardening, or sitting in the sun on the deck whenever I can. So I was surprised that it could be depleted just a few months after the gardening season is over here.

lynne, the current research has shown that low vit. d is related (but they don't know how) to a lot of ailments. mine dropped so low they had to put me on a mega prescription dose to get it back to where i could take just normal supplements.

which is odd, since i live in the south, and until i got sick, in the sun as much as i could stand (i loved the outdoors)

you know Jiffy--I too am on mega doses of prescription vita D--have been for several years--off and on and while I am not out in the sun a lot I am o ut a fair amount--I guess the deficiency jsut happens.

it does carol, it does. but the goal is to get it stable. which is where mine seems to be, but i take the supplement religiously. along with the 16 other pills that keep me alive

I just had my latest blood test to check my Vita D blood levels last wednesday.

I will find out how I am doing in a few weeks.

Wow 16 pills----