Good Things from Follow Up

I saw the rheumy yesterday and she agreed with my nephrologist that I do have SLE. She is doing blood work for food allergies and the normal blood work for SLE. She advised me that my stomach issues can be caused from lupus but she wanted to test me for the food allergies just in case. She wants me off all dairy and gluten products.

She changed my medication to Celcept seeing my stomach was crazy on the methrotxate. This will be the five drug for me! I pray that it works without any side effects! I can’t keep living on steroids and pain meds with my flares.

She confirmed Raynards and vasculuar disease (recent vasculitis and stress fracture left ankle). We will be watching the headaches and visual issues over the next six weeks to determine if I have any nero involvement. I am to log my progress. I will be following up with my eye doctor for the dry eye issue. I had to change my eye drops to non preseverative drop!

All and all it was a great visit! Finally got some stright answers! I am a happy camper with direction!

Deenie

Same here- I cannot tolerate dairy products I drink the almond milk though and it is delicious I also use sorbet and fresh fruit slushes instead of icecream!

Ann

I don’t eat red meat at all and I have not done that is several years! I don’t eat anything from a box of can. Most everything I cook starts on the raw side. However I am a bread lover! I stared the gluten avoidance a few weeks ago and can’t believe all the things that we consume that has gluten in them. Such as ketchup, mustard, and baking soda! I have switched to long gain products and avoid anything with wheat in it. I now that is process is going to take sometime because I am in a learning mode. Even soaps, toothpaste and shampoos have gluten in them. I am in amazement!

I don’t eat much dairy anyway! So that is no big deal. I have been make fruit sorbet snacks for two years! My husband loves them too!

I have a great rheumy! I am so lucky that she is in my corner!

Celcept is my fifth orwl medication experience! I am running out of options!

Thanks Ann!..Deenie



Ann A. said:

Dear Deenie,
I am so glad you had a good visit and got some direction. You know how excited it makes me that she wants to consider the nutritional aspects of your health. Sounds like you have found someone who has an understanding of functional medicine. So many people would feel so much better if they could give up the mammary secretions of bovine animals (yes, I like writing that phrase) and gluten. Many of us keep our bodies in a constant state of inflammation because of what we eat and drink. Removing those things from the diet make a big difference for many people. I hope that it helps you because if it does it means less meds. Wishing you the best that life has to offer.

PS - my ice cream maker has become the sorbet maker. Tart cherry juice sorbet is a great treat on a hot summer day.

Poobie

Thank you for your post!

Yes the rheumy told me to drink almond milk too. I don’t consume a lot of milk to begin with other then in cereal. I have done soy milk which is not to bad and I have even tried coconut milk, but don’t care too much for it.

Deenie



poobie said:

Same here- I cannot tolerate dairy products I drink the almond milk though and it is delicious I also use sorbet and fresh fruit slushes instead of icecream!

Hello Deenie,

I was pleased when you let me know what happened and you've got one good rheumo there mate like i said...the main thing i've got my fingerscrossed for his no neuro problems from the vasculitis as you've gone through enough already.

Deenie you sound like your still doing good with eating right...mine failed me on friday morning and been like it since...i had anorexia years back and i got out of it finally a year after meeting ste and weighing 7and half stone then having megolalastic anaemia hit me then and since then my appetite as never been large and i can eat any crap and not put weight on.

I've let you down and ste and i'm really SORRY....as he soon commented on it, as he said you was telling me everyday you'd been having your breakfast etc.

All my love to you. Terri xxx

I AM HAPPY THAT YOUR A HAPPY CAMPER..NOTHING LIKE GETTING STRAIGHT FORWARD ANSWERS.IT JUST MAKES THINGS MUCH BETTER. WELL HOPE THE NEXT VISIT GOES WELL..TAKE CARE..

Terri it is never to late to start eating right! Just do it! I am sure it will make you feel so much better. No need to apologize!

Deenie

Deenie christ knows what it is with me because i've not got much appetite i just let myself stretch all day until i have my tea...i've tried several times before we spoke about it, then i just relaspe back.

I know i need to sort something out plus i was doing well with the water which my body needs and me apologizing is correct.

Hugs Terri xxx

Dewing3569 said:

Terri it is never to late to start eating right! Just do it! I am sure it will make you feel so much better. No need to apologize!

Deenie

I do that sometimes, because of the way I am feeling. So I understand not have a appetite. However I try to fall right back in to eating properly after the poor feelings are gone!

Lot of love…Deenie

Thank you Deenie for understanding...your one hell of a friend mate.

Love you loads. xxx

Dewing3569 said:

I do that sometimes, because of the way I am feeling. So I understand not have a appetite. However I try to fall right back in to eating properly after the poor feelings are gone!

Lot of love.......Deenie